Increasingly widespread adoption of health information technology tools in clinical care increases interest in ethical and legal issues related to the use of these tools for public health and the effects of these uses on the clinician-patient relationship. It is argued that patients, clinicians, and society have generally uncontroversial duties to support civil society's public health mission, information technology supports this mission, and the effects of automated and computerized public health surveillance are likely to have little if any effect (...) on the clinician-patient relationship. It is also suggested, nevertheless, that electronic public health surveillance raises interesting and important ethical issues, some of which can be addressed if not resolved by empirical research, especially regarding patient preferences about secondary use of health data and their moral obligation to contribute to population- based health. (shrink)

One of the largest, oldest, and most interesting challenges in health care is the balancing act in which clinicians have generally uncontroversial duties both to individual patients and to communities. Physicians and nurses must — so we teach them — put patients first, and at the same time recognize that individuals are members of communities. Individuals affect the health of communities, and communities affect the health of individuals. Thus, the moral and professional duties that result are sometimes in conflict.Moreover, the (...) traditional, prosaic clinical encounter is evolving in an environment increasingly shaped by electronic health records, personal health records, pharmacogenomics and vast networks of data collection and storage for public health surveillance, human subjects research, health services evaluation, and comparative effectiveness research. Health information technology is changing everything. It would be perverse otherwise: imagine large amounts of data and information either ignored, missed, or collected and then ignored. (shrink)

Johan Brännmark's article “Patients as Rights Holders,” in this issue of the Hastings Center Report, squarely identifies some important problems with the way we in clinical practice conceive of our obligations to our patients. As a solution, he helpfully suggests augmenting our focus on autonomy and informed consent with a broader menu of considerations drawn from the literature on human rights. Respect for autonomy is, of course, one of the hallowed principles of bioethics. In our traditional understanding, our patients deserve (...) our respect because they are capable of autonomous choice, and the way we demonstrate our respect is by seeking their informed consent for our care. This model is so deeply ingrained that many of us have difficulty imagining that there could be any other way of thinking about it. But this model has two very serious drawbacks, problems that speak to much of what is wrong with health care today. (shrink)

The medical profession is steeped in traditions that guide its practice. These traditions were developed to preserve the well-being of patients. Transformations in science, technology, and society, while maintaining a self-governance structure that drives the goal of care provision, have remained hallmarks of the profession. The purpose of this paper is to examine ethical challenges in health care as it relates to Big Data, Accountable Care Organizations, and Health Care Predictive Analytics using the principles of biomedical ethics laid out by (...) Beauchamp and Childress. Among these are the use of Electronic Health Records within stipulations of the Health Insurance Portability and Accountability Act. Clinicians are well-positioned to impact health policy development to address ethical issues associated with the use of Big Data, Accountable Care, and Health Care Predictive Analytics as we work to transform the doctor–patient relationship towards improving population health outcomes and creating a healthier society. (shrink)

Although typically implicit, clinicians face an inherent conflict between their roles as medical healers and as providers of technical biomedicine (Scott et al. in Philos Ethics Humanit Med 4:11, 2009). This conflict arises from the tension between the physicalist model which still predominates in medical training and practice and the extra-physicalist dimensions of medical practice as epitomised in the concept of patient-centred care. More specifically, the problem is that, as grounded in a "borrowed" physicalist philosophy, the dominant "applied scientist" model (...) exhibits a number of limitations which severely restrict its ability to underwrite the effective practice of care. Moreover, being structural in character, these problems cannot be resolved by piecemeal modifications of the existing model, nor by an appeal to evidence-based medicine (Miles in J Eval Clin Pract 15(6):887-890, 2009; Miles in Folia Med 55(1):5-24, 2013; Miles et al. in J Eval Clin Pract 14(5):621-649, 2008). Hence, the need for medical theorists to "partner with experts in the humanities to build a sui generis philosophy of medicine" (Whatley in J Eval Clin Pract 20(6):961-964, 2014, p. 961). In response, the present paper seeks to vindicate the merits of hermeneutically-informed template in providing the requisite grounding. While capable of correcting for the limitations of the applied scientist model, a hermeneutically-informed template is a "both/and" approach, which seeks to complement rather than exclude the physicalist dimension, and thereby aspires to reconcile technical mastery with patient-centred care, rather than eschew one in favour of the other. As such, it can provide a cogent philosophical template for current best practice, which does justice to the art as well as the science of medical care. (shrink)

Physicians, nurses, and other clinicians readily acknowledge being troubled by encounters with patients who trigger moral judgments. For decades social scientists have noted that moral judgment of patients is pervasive, occurring not only in egregious and criminal cases but also in everyday situations in which appraisals of patients' social worth and culpability are routine. There is scant literature, however, on the actual prevalence and dynamics of moral judgment in healthcare. The indirect evidence available suggests that moral appraisals function via a (...) complex calculus that reflects variation in patient characteristics, clinician characteristics, task, and organizational factors. The full impact of moral judgment on healthcare relationships, patient outcomes, and clinicians' own well-being is yet unknown. The paucity of attention to moral judgment, despite its significance for patient-centered care, communication, empathy, professionalism, healthcare education, stereotyping, and outcome disparities, represents a blind spot that merits explanation and repair. New methodologies in social psychology and neuroscience have yielded models for how moral judgment operates in healthcare and how research in this area should proceed. Clinicians, educators, and researchers would do well to recognize both the legitimate and illegitimate moral appraisals that are apt to occur in healthcare settings. (shrink)

Background Older patients are often vulnerable and highly dependent on healthcare professionals’ assessment in the event of acute illness. In the context of ambulance services, this poses challenges as the assessment is normally conducted with a focus on identifying life-threatening conditions. Such assessment is not fully satisfactory in a patient relationship that also aims to promote and protect patient autonomy. Aim To describe ambulance clinicians’ understanding of older patients’ self-determination when the patient’s decision-making ability is impaired. Research design A (...) qualitative design with an inductive approach, guided by descriptive phenomenology. Participants In total, 30 ambulance clinicians, comprised of 25 prehospital emergency nurses, 1 nurse and 4 emergency medical technicians participated in 15 dyadic interviews. Ethical considerations The research was conducted in accordance with the Declaration of Helsinki, and permission was granted by the Swedish Ethical Review Authority. Findings The findings are presented in two themes: (1) Movement between explicit and implicit will; and (2) Contradictions about the patient’s best interests. The clinicians’ interpretations are based on an understanding of the patient’s situation using substitute decision-making in emergency situations and conversations that reveal the patient’s explicit wishes. Sometimes the clinicians collaborate to validate the patient’s implicit will, while they at other times subordinate themselves to others’ opinions. The clinicians find themselves in conflict between personal values and organisational values as they try to protect the patient’s self-determination. Conclusion The results indicate that older patients with an impaired decision-making ability risk losing the right to self-determination in the context of ambulance services. The clinicians face challenges that significantly affect their ability to handle the older patient’s unique needs based on a holistic perspective and their ability to be autonomous. (shrink)

The initial successes in recent years in harnessing machine learning technologies to improve medical practice and benefit patients have attracted attention in a wide range of healthcare fields. Particularly, it should be achieved by providing automated decision recommendations to the treating clinician. Some hopes placed in such ML-based systems for healthcare, however, seem to be unwarranted, at least partially because of their inherent lack of transparency, although their results seem convincing in accuracy and reliability. Skepticism arises when the physician as (...) the agent responsible for the implementation of diagnosis, therapy, and care is unable to access the generation of findings and recommendations. There is widespread agreement that, generally, a complete traceability is preferable to opaque recommendations; however, there are differences about addressing ML-based systems whose functioning seems to remain opaque to some degree—even if so-called explicable or interpretable systems gain increasing amounts of interest. This essay approaches the epistemic foundations of ML-generated information specifically and medical knowledge generally to advocate differentiations of decision-making situations in clinical contexts regarding their necessary depth of insight into the process of information generation. Empirically accurate or reliable outcomes are sufficient for some decision situations in healthcare, whereas other clinical decisions require extensive insight into ML-generated outcomes because of their inherently normative implications. (shrink)

Covid‐19 heralded a natural experiment with telemedicine. My experience as a clinician was very positive, and learning how to use telemedicine has made me a better doctor. Telemedicine has flipped the medical service paradigm; families do not need to conform their busy lives to the medical office workflow. An appointment can be a virtual house call that takes less time for my patient's family and allows me to learn even more about their home. While there are limitations of telemedicine, there (...) are good ethical reasons for clinicians to support the broader use of telehealth, including equity, efficiency, effectiveness, and respecting preferences. Empirical health‐services research that assesses satisfaction, quality, and health outcomes will be necessary to determine the impact of telehealth on a population level to ensure that is used in a way that promotes equity in care. (shrink)

When clinician‐patient relationships go wrong, the problem may not be merely that one person is knowingly mistreating the other. More likely, they are caught up in different stories, and animated by different moral visions. The task is for each to see the point of the other's story.

Digital communication between a patient and their clinician offers the potential for improved patient care, particularly for young people with long term conditions who are at risk of service disengagement. However, its use raises a number of ethical questions which have not been explored in empirical studies. The objective of this study was to examine, from the patient and clinician perspective, the ethical implications of the use of digital clinical communication in the context of young people living with long-term conditions. (...) A total of 129 semi-structured interviews, 59 with young people and 70 with healthcare professionals, from 20 United Kingdom -based specialist clinics were conducted as part of the LYNC study. Transcripts from five sites were read by a core team to identify explicit and implicit ethical issues and develop descriptive ethical codes. Our subsequent thematic analysis was developed iteratively with reference to professional and ethical norms. Clinician participants saw digital clinical communication as potentially increasing patient empowerment and autonomy; improving trust between patient and healthcare professional; and reducing harm because of rapid access to clinical advice. However, they also described ethical challenges, including: difficulty with defining and maintaining boundaries of confidentiality; uncertainty regarding the level of consent required; and blurring of the limits of a clinician’s duty of care when unlimited access is possible. Paradoxically, the use of digital clinical communication can create dependence rather than promote autonomy in some patients. Patient participants varied in their understanding of, and concern about, confidentiality in the context of digital communication. An overarching theme emerging from the data was a shifting of the boundaries of the patient-clinician relationship and the professional duty of care in the context of use of clinical digital communication. The ethical implications of clinical digital communication are complex and go beyond concerns about confidentiality and consent. Any development of this form of communication should consider its impact on the patient-clinician-relationship, and include appropriate safeguards to ensure that professional ethical obligations are adhered to. (shrink)

Moral injury occurs when a person perpetrates, bears witness to, or fails to prevent an act that transgresses their deeply held moral beliefs. The deeply held moral belief that physicians share is the oath they take when completing their lengthy training and embarking on their career: Put the needs of patients first. In today's American healthcare system, doctors, nurses, and other healthcare providers are increasingly forced to consider the demands of other stakeholders -- insurers, hospitals, even their own financial security (...) -- before the needs of their patients. Whenever they are forced to make a decision that contravenes their patient's best interest, they feel a sting of moral injustice. Over time, these repetitive insults amass into moral injury. Moral injury and its causes help explain why healthcare workers started leaving the field in droves long before the COVID-19 pandemic exposed weaknesses in the US system, why a rich country has such poor outcomes in certain categories, why there is a shortage of young doctors training for critical areas, and why patients feel so frustrated. In If I Betray These Words, Wendy Dean explores and exposes the impacts of moral injury through vividly told stories that are at once bewildering and eye-opening. Her book serves as a roadmap through a healthcare landscape that can be confounding, and at times even hellish, for those who must navigate it, and it suggest alternative routes for healers and their patients. (shrink)

Background As more people are living longer, they become frail and are affected by multi-morbidity, resulting in increased demands from the ambulance service. Being vulnerable, older patients may have reduced decision-making capacity, despite still wanting to be involved in decision-making about their care. Their needs may be complex and difficult to assess, and do not always correspond with ambulance assessment protocols. When needing an ambulance, older patients encounter ambulance clinicians who are under high workloads and primarily consider themselves as emergency (...) medical care providers. This situates them in the struggle between differing expectations, and ethical conflicts may arise. To resolve these, providing ethical care, focussing on interpersonal relationships and using ethical competence is needed. However, it is not known whether ambulance clinicians possess the ethical competence required to provide ethical care. Thus, the aim of this study was to deductively explore their ethical competence when caring for older patients with reduced decision-making ability. Methods A qualitative deductive and exploratory design was used to analyse dyadic interviews with ambulance clinicians. A literature review, defining ethical competence as comprising ethical sensitivity, ethical knowledge, ethical reflection, ethical decision-making, ethical action and ethical behaviour, was used as a structured categorization matrix for the analysis. Results Ambulance clinicians possess ethical competence in terms of their ethical knowledge, highlighting the need for establishing an interpersonal relationship with the older patients. To establish this, they use ethical sensitivity to interpret the patients’ needs. Doing this, they are aware of their ethical behaviour, signifying how they must act respectfully and provide the necessary time for listening and interacting. Conclusions Ambulance clinicians fail to see their gut feeling as a professional ethical competence, which might hinder them from reacting to unethical ways of working. Further, they lack ethical reflection regarding the benefits and disadvantages of paternalism, which reduces their ability to perform ethical decision-making. Moreover, their ethical knowledge is hampered by an ageist approach to older patients, which also has consequences for their ethical action. Finally, ambulance clinicians show deficiencies regarding their ethical reflections, as they reflect merely on their own actions, rather than on their values. (shrink)

Background: A significant concern for patients treated for cancer is fear of cancer recurrence. Although a common experience, some patients report high levels of FCR that are difficult to manage and result in over vigilant checking and high use of health services. There has been speculation about the relationship of FCR with gender with mixed reports from several systematic reviews.Aims: To determine the association of FCR with gender in previous reported studies and investigate the strength of this relationship (...) with various moderators including year of publication, type of cancer and measurement attributes of self-reported FCR instruments.Methods: A systematic review was conducted with searches of the literature from the MEDLINE, PubMed, Embase, and PsycINFO databases following PRISMA guidelines. All the included papers were divided into two groups, namely: “pure” that comprise only of patients with cancer types that both men and women can contract and “mixed” that report on patients with a variety of cancer types. The association between gender and FCR level was assessed by meta-analysis. A meta-regression was performed to investigate the moderating effects of factors including: the year of publication, cancer type, mean age of the sample and the length of the FCR scale measurement. This review was registered with PROSPERO, ID: CRD42020184812.Results: Finally, 29 studies were included. The N size of pooled participants was 33,339. The meta-analysis showed females to have an overall higher level of FCR than males. The meta-regression of moderating or control variables found little, if any, systematic variation in effect-sizes.Conclusion: This systematic review has clarified a potentially confused pattern of previous results in understanding the relationship between gender and FCR. Women report higher levels of FCR than men and this feature is one that clinicians and researchers can factor into their practice and future studies. The effect size is moderate, hence there is ample variation in FCR level, independent of gender, that requires further investigation. (shrink)

It describes and explains the patient-centered model examining and evaluating qualitative and quantitative research. It comprehensively covers the evolution and the six interactive components of the patient-centered clinical method, taking the reader through the relationships between the patient and doctor and the patient and clinician. All the editors are professors in the Department of Family Medicine at the University of Western Ontario, London, Canada.

This article presents a historical overview of the role played by neurology patients and clinicians in the development of understanding brain–behavior relationships and argues that, even with the advent of sophisticated functional brain imaging techniques, this clinical approach remains valuable. It is particularly important in the biological study of religion, where there is a danger that piecemeal and reductionist approaches will come to dominate. It is argued that religion is a socially located, multifaceted, and embodied phenomenon that occurs not in (...) the brain but in the lives of human persons. Insights drawn from people living with conditions affecting the brain are thus vital for a full understanding of human identity, spirituality, and religion. (shrink)

This article presents a radical claim: American medical ethics is broken, and it needs love to be healed. Due to a unique set of cultural and economic pressures, American medical ethics has adopted a mechanistic mode of ethical reasoning epitomized by the doctrine of principlism. This mode of reasoning divorces clinicians from both their patients and themselves. This results in clinicians who can ace ethics questions on multiple‐choice tests but who fail either to recognize a patient's humanity or to navigate (...) the ethical quandaries into which they are frequently thrown. Drawing on personal experience as well as the philosophical work of Augustine of Hippo, Simone Weil, and Iris Murdoch, we propose a novel ethical approach grounded in a conception of neighbor love, specifically, the virtue of love understood as attention to a sufferer's humanity. We conclude with five practical recommendations for reimagining medical ethics education oriented around the virtue of love. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Should Clinicians’ Views of Mental Illness Influence the DSM?Elizabeth H. Flanagan (bio) and Roger K. Blashfield (bio)Keywordsclinicians, DSM, values, psychopathology, scienceThe relationship between clinicians and the DSM is complex. Clinicians are the primary intended audience of the DSM. However, as Widiger (2007) pointed out in his commentary, there is a tension associated with trying to meet the clinical goals of the DSM and also trying to optimize the (...) scientific goals of the DSM. Most commentators would agree that the recent editions of the DSM (from the DSM-III onward) have favored scientific values (e.g., Sadler 2005). Some commentators have taken sides and aligned themselves with either clinicians or with the science of classification. For instance, Garb (2005) has argued that clinicians should receive incentives to align themselves more closely with the science of the DSM. In contrast, Westen and Shedler (1999) have favored a clinician-based approach to the DSM and have argued that an ideal classification should be based on the prototypes that clinicians use to conceptualize diagnostic categories. Perhaps an extreme suggestion on how to deal with this tension between the values of clinicians and the values of scientists is to adopt the ICD-10 solution and create two versions of the next DSM. One version would be written for clinicians and another for researchers (Phillips et al. 2003).Widiger (2007) wondered whether the two of us as authors are on the fence about how the views of clinicians should affect the DSM. As clinical psychologists who are both clinicians and researchers, we understand his comment, especially in light of our attempt in our article not to overgeneralize from the time-consuming, labor-intensive, yet methodologically limited study we reported in our major paper.Nonetheless, our answer to the question asked in the title of this response, “Should clinicians’ views of mental illness influence the diagnostic manual?” is a clear and unequivocal yes. In our view, too much of the research literature stimulated by the recent DSMs has primarily used the diagnostic criteria in these DSMs to specify patient samples and then perform various experiments to study the DSM categories. We favor a different approach to research which is consistent with a comment once made by the philosopher of science, Karl Popper: “scientific theories originate from myths, and... a myth may contain important anticipations of scientific theories” (1963, 39). We believe that clinicians, with their years [End Page 285] of experience dealing with the ambiguities, the emotionality, and the chaos of psychopathology, have formed complex conceptual systems to try to understand the mysteries of abnormal behavior. We strongly support increased research attempts that will use clinicians as subjects and that will attempt to understand how clinicians use diagnostic concepts to understand patients.Although research on clinicians has not attracted a large amount of attention in the field, there is a long history of such research studies. For instance, in the 1970s, Overall used multivariate techniques to create graphical maps of how clinicians represented relationships among diagnoses (Overall et al. 1977). Widiger has used a similar strategy in some of his research (Widiger et al. 1987). In the early 1980s, a view of concept formation from cognitive psychology was used by Cantor et al. (1980) to look at psychiatric diagnoses as representing prototypes. Horowitz and colleagues extended this research. Blashfield and his colleagues had a grant to use the prototype model to study personality disorders and performed research investigating both case histories (Blashfield et al. 1985) and analyses of diagnostic criteria (Blashfield and Breen 1989; Davis, Blashfield, and McElroy 1993). Westen and colleagues have attempted to reconceptualize DSM personality disorder categories using the prototype model (Westen and Shedler 1999). Ahn and her colleagues (Ahn et al. 2006; Kim and Ahn 2002) have taken more recent applications of ideas from cognitive psychology to study how clinicians use and understand diagnostic categories. Finally, Flanagan and colleagues (Flanagan and Blashfield 2006; Flanagan, Keeley, and Blashfield, in press; Flanagan, Miller, and Davidson, submitted) have used qualitative and quantitative data analysis techniques to try to understand the diagnostic concepts held by experienced clinicians.Besides empirical studies of how clinicians use diagnostic concepts, we also support the increased interest in... (shrink)

The dominant unspoken philosophical basis of medical care in the United States is a form of Cartesian reductionism that views the body as a machine and medical professionals as technicians whose job is to repair that machine. The purpose of this paper is to advocate for an alternative philosophy of medicine based on the concept of healing relationships between clinicians and patients. This is accomplished first by exploring the ethical and philosophical work of Pellegrino and Thomasma and then by connecting (...) Martin Buber's philosophical work on the nature of relationships to an empirically derived model of the medical healing relationship. The Healing Relationship Model was developed by the authors through qualitative analysis of interviews of physicians and patients. Clinician-patient healing relationships are a special form of what Buber calls I-Thou relationships, characterized by dialog and mutuality, but a mutuality limited by the inherent asymmetry of the clinician-patient relationship. The Healing Relationship Model identifies three processes necessary for such relationships to develop and be sustained: Valuing, Appreciating Power and Abiding. We explore in detail how these processes, as well as other components of the model resonate with Buber's concepts of I-Thou and I-It relationships. The resulting combined conceptual model illuminates the wholeness underlying the dual roles of clinicians as healers and providers of technical biomedicine. On the basis of our analysis, we argue that health care should be focused on healing, with I-Thou relationships at its core. (shrink)

Background Patients with chronic pain face significant barriers in finding clinicians to manage long-term opioid therapy (LTOT). For patients on LTOT, it is increasingly common to have them sign opioid treatment agreements (OTAs). OTAs enumerate the risks of opioids, as informed consent documents would, but also the requirements that patients must meet to receive LTOT. While there has been an ongoing scholarly discussion about the practical and ethical implications of OTA use in the abstract, little is known about how clinicians (...) use them and if OTAs themselves modify clinician prescribing practices.Objective To determine how clinicians use OTAs and the potential impacts of OTAs on opioid prescribing.Design We conducted qualitative analysis of four focus groups of clinicians from a large Midwestern academic medical center. Groups were organized according to self-identified prescribing patterns: two groups for clinicians who identified as prescribers of LTOT, and two who did not.Participants 17 clinicians from General Internal Medicine, Family Medicine, and Palliative Care were recruited using purposive, convenience sampling.Approach Discussions were recorded, transcribed, and analyzed for themes using reflexive thematic analysis by a multidisciplinary team.Key Results Our analysis identified three main themes: (1) OTAs did not influence clinicians’ decisions whether to use LTOT generally but did shape clinical decision-making for individual patients; (2) clinicians feel OTAs intensify the power they have over patients, though this was not uniformly judged as harmful; (3) there is a potential misalignment between the intended purposes of OTAs and their implementation.Conclusion This study reveals a complicated relationship between OTAs and access to pain management. While OTAs seem not to impact the clinicians’ decisions about whether to use LTOT generally, they do sometimes influence prescribing decisions for individual patients. Clinicians shared complex views about OTAs’ purposes, which shows the need for more clarity about how OTAs could be used to promote shared decision-making, joint accountability, informed consent, and patient education. (shrink)

The historical relationship between health care professionals and people with disabilities is fraught, a fact all the more troubling in light of the distinctive roles clinicians play in both establishing and responding to that which is considered normal or abnormal by society at large. Those who wish to improve their clinical practice might struggle, however, to keep up with developments across numerous disability communities as well as the ever-growing body of disability studies scholarship. To assist with this goal, I (...) offer an overview of recent disability theory, outline a set of responsibilities clinicians have to disability communities, and provide recommendations for clinicians who hope to justly treat patients with disabilities and improve their care and health outcomes. (shrink)

Boundaries between research and clinical practice blur in health research conducted by clinician-researchers. We describe a typology, of clinician-researcher dual-role tensions, with two overarching catalysts: acting as a clinical resource for patient-participants and forming researcher–participant relationships mirroring clinician–patient relationships. Using the typology as an analytic template we explored blurred boundaries in five illustrative, non-clinician, critical studies. Like clinician-researchers, critical researchers act in ways that promote rapport and relationships with their participants, which can blur boundaries. While clinician-researchers see tension between clinician (...) and researcher roles, we ask what roles critical researchers attempt to distinguish: ethically minded citizen and researcher, socially conscious community member and researcher, or friend and researcher? Anticipating catalysts of dual-role tension may assist critical researchers in planning and conducting robust research. (shrink)

This systematic review identified and evaluated instruments measuring patients' perceptions of patient‐centred nursing care. Of 2629 studies reviewed, 12 were eligible for inclusion. Four instruments were reported: The Individualized Care Scale, the Client‐Centred Care Questionnaire, the Oncology patients' Perceptions of the Quality of Nursing Care Scale and the Smoliner scale. These instruments cover themes addressing patient participation and the clinician–patient relationship. Instruments were shown to have satisfactory psychometric properties, although not all were adequately assessed. More research is needed regarding (...) test–retest reliability, convergent and discriminant validity, validity with known groups and structural validity using confirmatory factor analysis. (shrink)

According to many of its proponents, shared decision making ("SDM") is the right way to interpret the clinician-patient relationship because it respects patient autonomy in decision-making contexts. In particular, medical ethicists have claimed that SDM respects a patient's relational autonomy understood as a capacity that depends upon, and can only be sustained by, interpersonal relationships as well as broader health care and social conditions. This paper challenges that claim. By considering two primary approaches to relational autonomy, this paper argues (...) that standard accounts of SDM actually undermine patient autonomy. It also provides an overview of the obligations generated by the principle of respect for relational autonomy that have not been captured in standard accounts of SDM and which are necessary to ensure consistency between clinical practice and respect for patient autonomy. (shrink)

Effective doctor patient relationships are predicated on doctors' relational engagement and affective/holistic communication with the patients. On the contrary, the contemporary healthcare and patient-clinician communication are at odds with the desirable professional goals, often resulting in dehumanization and demoralization of patients. Besides denigrating the moral agency of a patient such apathetic interactions and unprofessional approach also affect the treatment and well-being of the sufferer. Foregrounding multifaceted doctor-patient relationships, graphic pathographies are a significant cultural resource which recreate the embodied moment of (...) clinical encounters as they also lay bare qualitative tensions between patient' illness experience with doctor's professional understanding of the same. Taking these cues, the present article drawing theoretical postulates of Rita Charon, Deborah Lupton, and Havi Carel close reads Peter Dunlap-Shohl's My Degeneration: A Journey Through Parkinson's, Brian Fies' Mom's Cancer, and Stan Mack's Janet & Me: An Illustrated Story of Love and Loss to investigate the nature of doctor-patient relationship vis-à-vis communication and the implications of bad doctoring/communicative practices on patient identity and emotions. Furthermore, the article also examines the aesthetic and functional role of comics in bringing into relief the graphically mediated doctor-patient relationship. (shrink)

Today, modern Western medicine is facing a quality-of-care crisis that is undermining the patient–physician relationship. In this paper, a notion of the epistemically virtuous clinician is proposed in terms of both the reliabilist and responsibilist versions of virtue epistemology, in order to help address this crisis. To that end, a clinical case study from the literature is first reconstructed. The reliabilist intellectual virtues, including the perceptual and conceptual virtues, are then discussed and applied to the case study. Next, a (...) similar method is employed to examine the responsibilist intellectual virtues, including curiosity, courage, honesty, and humility, and to apply them to the case study. To round out the discussion, the love of knowledge and both theoretical and practical wisdom are explored and applied to the case study. The paper concludes with a brief discussion of how the notion of an epistemically virtuous clinician addresses the quality-of-care crisis, in terms of the connection between ethical and intellectual virtues, and of the notion’s implications for medical education. (shrink)

Patient-centred communication is widely regarded as a best practice in contemporary medical care, both in terms of maximising health outcomes and respecting persons. However, not all patients communicate in ways that are easily understood by clinicians and other healthcare professionals. This is especially so for patients with non-speaking intellectual disabilities. We argue that assumptions about intellectual disability—including those in diagnostic criteria, providers’ implicit attitudes and master narratives of disability—negatively affect communicative approaches towards intellectually disabled patients.Non-speakingintellectually disabled patients may also be (...) taken to lack decision-making capacity and resultingly, may be given very little role in determining their care. But, given evidence of the heterogeneous communicative practices available to non-speaking patients, efforts should be made to extend patient-centred communication to them. We offer four suggestions for doing so: (1) treating those with non-speaking intellectual disabilities as potential communicators; (2) lengthening appointment times to develop relationships necessary for communication; (3) disentangling capacity from communication in concept and in practice; and (4) recognising the bidirectional connection between supported decision-making and patient-centred communication. (shrink)

In the last years, TV documentaries, articles in popular magazines, and Internet content have increased the public visibility of deep brain stimulation (DBS). The media may have also provoked significant clinical and public interest in potential future applications for treating psychiatric disorders beyond the current use of DBS in neurological disorders. In this article, we review and discuss the topic of patient and public understanding of DBS, focusing on both the clinical consequences of patient understanding as well as the broader (...) social consequences of public understanding. The literature and the experience of clinicians suggest that strongly optimistic media reports of DBS have had detrimental consequences for informed consent and the management of patient expectations before and after surgery. Likewise, this context has created complex issues for trust between clinicians, patients, and their families and may have hard-to-predict social impacts including on the relationships between public understanding of neuroscience, biological therapies, stigma, and mental illness. We propose an approach to tackle the clinical and social consequences of media messages on public understanding within a broad and interdisciplinary effort with concrete actions. This approach includes actions by all key players, including not only providers but also patients and their family members, as well as journalists. To further address issues at the intersection of informed consent and patient expectation, there should be more discussion on and actual testing and measurement of these recommendations or similarly minded practice changes. (shrink)

Substantial efforts have recently been made to reform the physician-patient relationship, particularly toward replacing the `silent world of doctor and patient' with informed patient participation in medical decision-making. This 'new ethos of patient autonomy' has especially insisted on the routine provision of informed consent for all medical interventions. Stronly supported by most bioethicists and the law, as well as more popular writings and expectations, it still seems clear that informed consent has, at best, been received in a lukewarm fashion (...) by most clinicians, many simply rejecting what they commonly refer to as the `myth of informed consent'. The purpose of this book is to defuse this seemingly intractable controversy by offering an efficient and effective operational model of informed consent. This goal is pursued first by reviewing and evaluating, in detail, the agendas, arguments, and supporting materials of its proponents and detractors. A comprehensive review of empirical studies of informed consent is provided, as well as a detailed reflection on the common clinician experience with attempts at informed consent and the exercise of autonomy by patients. In the end, informed consent is recast as a management tool for pursuing clinically and ethically important goods and values that any clinician should see as meriting pursuit. Concurrently, the model incorporates a flexible, anticipatory approach that recognizes that no static, generic ritual can legitimately pursue the quite variable goods and values that may be at stake with different patients in different situations. Finally, efficiency of provision is addressed by not pursuing the unattainable and ancillary. Throughout, the traditional principle of beneficence is appealed to toward articulating an operational model of informed consent as an intervention that is likely to change outcomes at the bedside for the better. (shrink)

In a 2015 Hastings Center Report essay, Robert Truog and his coauthors argued that the clinical ethics portion of medical education should cast both a wider and a finer net than is sometimes realized. Many of the morally important moments in patient care are missed if we teach only general moral principles, they held; we also need to give attention to an indefinite stream of “microethical” decisions in everyday clinical practice. In the current issue, Truog plays out a similar theme (...) as he discusses the moral significance of touching a patient and asks how artificial intelligence and other emerging technologies may change this ancient part of the physician‐patient relationship. And one of the articles in this issue examines the significance of clinicians’ relationships with other clinicians. Donna Chen and colleagues propose, in effect, that “teamwork” has become part of the ethics of everyday clinical practice—a new addition to what Larry Churchill and David Schenck called the “healing skills.”. (shrink)

Substantial efforts have recently been made to reform the physician-patient relationship, particularly toward replacing the `silent world of doctor and patient' with informed patient participation in medical decision-making. This 'new ethos of patient autonomy' has especially insisted on the routine provision of informed consent for all medical interventions. Stronly supported by most bioethicists and the law, as well as more popular writings and expectations, it still seems clear that informed consent has, at best, been received in a lukewarm fashion (...) by most clinicians, many simply rejecting what they commonly refer to as the `myth of informed consent'. The purpose of this book is to defuse this seemingly intractable controversy by offering an efficient and effective operational model of informed consent. This goal is pursued first by reviewing and evaluating, in detail, the agendas, arguments, and supporting materials of its proponents and detractors. A comprehensive review of empirical studies of informed consent is provided, as well as a detailed reflection on the common clinician experience with attempts at informed consent and the exercise of autonomy by patients. In the end, informed consent is recast as a management tool for pursuing clinically and ethically important goods and values that any clinician should see as meriting pursuit. Concurrently, the model incorporates a flexible, anticipatory approach that recognizes that no static, generic ritual can legitimately pursue the quite variable goods and values that may be at stake with different patients in different situations. Finally, efficiency of provision is addressed by not pursuing the unattainable and ancillary. Throughout, the traditional principle of beneficence is appealed to toward articulating an operational model of informed consent as an intervention that is likely to change outcomes at the bedside for the better. (shrink)

The fiduciary nature of the patient-physician relationship requires clinicians to act in the best interest of their patients. Patients are vulnerable due to their health status and lack of medical knowledge, which makes them dependent on the clinicians’ expertise. Competent patients, however, may reject the recommendations of their physician, either refusing beneficial medical interventions or procedures based on their personal views that do not match the perceived medical indication. In some instances, the patients’ refusal may jeopardize their health or (...) life but also compromise the clinician’s moral responsibility to promote the patient’s best interests. In other words, health professionals have to deal with patients whose behavior and healthcare decisions seem counterproductive for their health, or even deteriorate it, because of lack of knowledge, bad habits or bias without being the patients’ free voluntary choice. The moral dilemma centers on issues surrounding the limits of the patient’s autonomy and the clinician’s role to promote the well-being of the patient. In this paper we argue that the use of manipulative strategies, albeit considered beneficent, defeats the purpose of patient education and therefore should be rejected; and the appropriate strategy is to empower patients through patient education which enhances their autonomy and encourages them to become full healthcare partners as opposed to objects of clinical intervention or entities whose values or attitudes need to be shaped and changed through education. First, we provide a working definition of the concept of patient education and a brief historical overview of its origin. Second, we examine the nature of the patient-physician relationship in order to delineate its boundaries, essential for understanding the role of education in the clinical context. Third, we argue that patient education should promote self-rebiasing, enhance autonomy, and empower patients to determine their therapeutic goals. Finally, we develop a moral framework for patient education. (shrink)

Treatment informed consent aims to preserve the autonomy of patients in the clinician – patient relationship so as to ensure valid consent. An acceptable method of evaluating understanding of consent information is by assessing the extent of recall by patients of the pieces information believed to have been passed across. When concerns are not satisfactorily addressed from the patients’ perspective, recall of consent information may be low. This study is a questionnaire – based cross – sectional interview of consecutive (...) adult surgical patients who could give their respective medical histories and who were booked for elective major surgical procedures over a period of 7 months in a tertiary health institution in southeastern Nigeria. Four to five days after a formal consent session, during ward admission, extent of recall of information on the nature of the disease condition or diagnosis, the nature of the planned procedure and the risks involved in the planned procedure were assessed and analyzed on the background of how satisfying the consent sessions were from individual patient’s perspective. Generally, the recall of nature of disease condition and nature of planned procedure is better than recall of risks involved in the planned procedure. More specifically however, recall in these 3 domains is significantly better among the patients that affirmed that their concerns were satisfactorily addressed. The findings from this study support that no effort should be spared in ensuring that the consent information are satisfying to the patients from the patients’ viewpoint. (shrink)

The goals of medicine -- A story about a patient with aortic stenosis -- What are facts in medicine? -- Clarify the chain of events that led to the present state : the case as a narrative -- The case of Myra Manner -- Examine your presuppositions and preconceptions -- Separate and examine the values at issue -- A question of judgment -- The patient, the doctor, and the relationship -- Observation, prognosis, and prognosticating -- Thinking in medicine -- (...) Accepting the challenge. (shrink)

This January‐February 2020 issue marks the start of the Hastings Center Report's fiftieth volume. The issue introduces the column Looking Back, Looking Forward, which we plan to run in this volume only. Conceived by Hastings Center fellows Douglas Diekema and Lainie Friedman Ross, the column will explore the significance of landmark publications from the first fifty years of bioethics. For the first installment, Diekema looks at the unconventional moral position Hans Jonas took in his 1969 essay “Philosophical Reflections on Experimenting (...) with Human Subjects.” In the lead article, “Trust, Risk, and Race in American Medicine,” Laura Specker Sullivan contextualizes patient mistrust within a history of racism in general and in the nation's biomedical research and clinical institutions specifically. Specker Sullivan proposes ways for individual clinicians to improve relationships with distrustful patients and their families. Two commentaries provide additional insights and recommendations about the work of earning patient trust. (shrink)

The aim of this paper is to start a debate about ethical issues associated with the practice of clinical audit. This is an area that has not received much consideration. The role of clinical audit is to raise general clinical standards. The ethical issues of clinical audit may have far-reaching consequences for clinicians, patients, health care providers and purchasers. Guidance is required to provide consistency in approach so that those involved in clinical audit, at whatever level, can be confident that (...) they are following good practice. Clinicians and managers often think of good practice as being a technical matter. The main point of this paper is to bring out important ethical dimensions to good practice. (shrink)

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

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

Discussions of patient-centred care and patient autonomy in bioethics have tended to focus on the decision-making context and the process of obtaining informed consent, leaving open the question of how patients ought to be counselled in the daily maintenance of their health and management of chronic disease. Patient activation is an increasingly prominent counselling approach and measurement tool that aims to improve patients’ confidence and skills in managing their own health conditions. The strategy, which has received little conceptual or ethical (...) analysis, raises important questions about how clinicians ought to foster confidence and a sense of control in their patients without exposing them to blame, stigma and other harms. In this paper, we describe patient activation, discuss its relationship to personal responsibility, autonomy and health disparities, and make recommendations regarding its use and measurement. (shrink)

As in other countries, the traditional doctor-patient relationship in the Japanese healthcare system has often been characterised as being of a paternalistic nature. However, in recent years there has been a gradual shift towards a more participatory-patient model in Japan. With advances in technology, the possibility to use digital technologies to improve patient interactions is growing and is in line with changing attitudes in the medical profession and society within Japan and elsewhere. The implementation of an online patient engagement (...) platform is being considered by the Myotonic Dystrophy Registry of Japan. The aim of this exploratory study was to understand patients’ views and attitudes to using digital tools in patient registries and engagement with medical research in Japan, prior to implementation of the digital platform. We conducted an exploratory, cross-sectional, self-completed questionnaire with a sample of myotonic dystrophy patients attending an Open Day at Osaka University, Japan. Patients were eligible for inclusion if they were 18 years or older, and were diagnosed with MD. A total of 68 patients and family members attended the Open Day and were invited to participate in the survey. Of those, 59 % submitted a completed questionnaire. The survey showed that the majority of patients felt that they were not receiving the information they wanted from their clinicians, which included recent medical research findings and opportunities to participate in clinical trials, and 88 % of patients indicated they would be willing to engage with digital technologies to receive relevant medical information. Patients also expressed an interest in having control over when and how they received this information, as well as being informed of how their data is used and shared with other researchers. Overall, the findings from this study suggest that there is scope to develop a digital platform to engage with patients so that they can receive information about medical care and research opportunities. While this study group is a small, self-selecting population, who suffer from a particular condition, the results suggest that there are interested populations within Japan that would appreciate enhanced communication and interaction with healthcare teams. (shrink)

Developing a care plan in a critical care context can be challenging when the therapeutic alliance between clinicians and families is compromised by anger. When these cases occur, clinicians often turn to clinical ethics consultants to assist them with repairing this alliance before further damage can occur. This paper describes five different reasons family members may feel and express anger and offers concrete strategies for clinical ethics consultants to use when working with angry families acting as surrogate decision makers for (...) critical care patients. We reviewed records of consults using thematic analysis between January 2015 and June 2016. Each case was coded to identify whether the case involved a negative encounter with an angry family. In our review, we selected 11 cases with at least one of the following concerns or reasons for anger: perceived or actual medical error, concerns about the medical team’s competence, miscommunication, perceived conflict of interest or commitment, or loss of control. To successfully implement these strategies, clinical ethics consultants, members of the medical team, and family members should share responsibility for creating a mutually respectful relationship. (shrink)

Clinical ethics consultations exist to support patients, families and clinicians who are facing ethical or moral challenges related to patient care. They provide a forum for open communication, where all stakeholders are encouraged to express their concerns and articulate their viewpoints. Ethics consultations can be requested by patients, caregivers or members of a patient’s clinical or supportive team. Althoughpatientsand by extension their families (especially in cases of decisional incapacity) are the common denominators in most ethics consultations, these constituents are theleastlikely (...) to request them. At many healthcare organisations in the USA, ethics consultations are overwhelmingly requested by physicians and other clinicians. We believe it is vital that healthcare institutions bridge the knowledge gaps and power imbalances over access to ethics consultation services through augmented policies, procedures and infrastructure. With enhanced education and support, patients and families may use ethics consultation to elevate their voices and prioritise their unique characteristics and preferences in the delivery of their healthcare. Empowering patients and families to request ethics consultation can only strengthen the patient/family–clinician relationship, enhance the shared decision-making model of care and ultimately lead to improved patient-centred care. (shrink)

Background Non-therapeutic trials in which terminally ill cancer patients are asked to undergo procedures such as biopsies or venipunctures for research purposes, have become increasingly important to learn more about how cancer cells work and to realize the full potential of clinical research. Considering that implementing non-therapeutic studies is not likely to result in direct benefits for the patient, some authors are concerned that involving patients in such research may be exploitive of vulnerable patients and should not occur at all, (...) or should be greatly restricted, while some proponents doubt whether such restrictions are appropriate. Our objective was to explore clinician-researcher attitudes and concerns when recruiting patients who are in advanced stages of cancer into non-therapeutic research. Methods We conducted a qualitative exploratory study by carrying out open-ended interviews with health professionals, including physicians, research nurses, and study coordinators. Interviews were audio-recorded and transcribed. Analysis was carried out using grounded theory. Results The analysis of the interviews unveiled three prominent themes: 1) ethical considerations; 2) patient-centered issues; 3) health professional issues. Respondents identified ethical issues surrounding autonomy, respect for persons, beneficence, non-maleficence, discrimination, and confidentiality; bringing to light that patients contribute to science because of a sense of altruism and that they want reassurance before consenting. Several patient-centered and health professional issues are having an impact on the recruitment of patients for non-therapeutic research. Facilitators were most commonly associated with patient-centered issues enhancing communication, whereas barriers in non-therapeutic research were most often professionally based, including the doctor-patient relationship, time constraints, and a lack of education and training in research. Conclusions This paper aims to contribute to debates on the overall challenges of recruiting patients to non-therapeutic research. This exploratory study identified general awareness of key ethical issues, as well as key facilitators and barriers to the recruitment of patients to non-therapeutic studies. Due to the important role played by clinicians and clinician-researchers in the recruitment of patients, it is essential to facilitate a greater understanding of the challenges faced; to promote effective communication; and to encourage educational research training programs. (shrink)

BackgroundThe nature of the relationship between a clinical investigator and a research subject has generated considerable debate because the investigator occupies two distinct roles: clinician and scientist. As a clinician, the investigator has duties to provide the patient with optimal care and undivided loyalty. As a scientist, the investigator has duties to follow the rules, procedures and methods described in the protocol.Results and conclusionIn this article, I present a contextual approach to the investigator-subject relationship. The extent of the (...) investigator's duty to provide the patient/subject with clinical care can vary from one situation to the next, as a function of several factors, including: the research design, benefits and risks of the research; the subject's reasonable expectations, motivations, and vulnerabilities; the investigator's ability to benefit the subject; and the investigator's prior relationship with the subject. These and other factors need to be considered when determining the clinical investigator's obligations to provide clinical care to human research subjects. In some research contexts, the investigator has extensive clinical obligations to the patient/subject; in others, the investigator has minimal ones. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Philosophy, Psychiatry, & Psychology 10.1 (2003) 17-21 [Access article in PDF] Self-Injury:Symbolic Sacrifice/Self-Assertion Renders Clinicians Helpless Christa Krüger Keywords feminism, iconic communication, moral conflict, oppression, psychiatrist/psychologist roles, societal norms. POTTER'S PAPER CONSIDERS self-injury in women diagnosed with borderline person ality disorder (BPD) to be a form of body modification where the body is used to communicate meaning. She touches on symbolism as a possible explanatory theory for this sort (...) of self-injury. She also refers to the culture of body commodification as underlying self-injury. She then argues that clinicians have a duty to give uptake to the patient's own interpretations about the meaning of the self-injury. Giving uptake is a virtuous approach for ethical interactions with people diagnosed with BPD who self-injure, and it aims to preserve the communicator's integrity, along with other benefits. Potter offers five maxims for giving uptake properly. However, I shall argue that giving uptake can be very difficult for clinicians, and that an appreciation of this difficulty depends on an expansion and linkage of some of the theories that she touched on. Self-injury is revisited experimentally as a double-edged sword of symbolic sacrifice and iconic-symbolic self-assertion. This revisiting aims to illustrate how clinicians might be caught in a double bind, where giving uptake properly might be very difficult if not more or less doomed to fail.Potter's paper starts by situating self-injury in a broader discourse of body modifications. In this discourse the body is being used as a text, a tool to communicate meaning. The meaning that is communicated might be difficult or impossible to articulate otherwise (by using words, for example). The meaning of the communication is embedded in a context of social, cultural, religious, political, and other norms. Potter explores possible interpretations of the meaning of self-injury in women with BPD, including an interpretation of self-injury as symbolic sacrifice. She suggests that a cultural understanding/nonunderstanding of the meaning of a particular instance of self-injury is an important determinant of whether such self-injury is considered pathological/nonpathological. She then shifts the focus to the present-day culture in which women's bodies are commodified and objectified, and where women become alienated from their bodies. Self-injury might then be interpreted as an attempt to re-own one's body as a part of oneself. This re-owning is a socially transgressive act that violates repressive norms for the bodies of women. [End Page 17]Notwithstanding these possible significations of self-injury, Potter then argues that clinicians have a duty to give uptake to the patient's own interpretations, instead of jumping to conclusions (my oversimplification) about the meaning of the self-injury. Giving uptake, then, constitutes a framework for ethical interactions with people diagnosed with BPD who self-injure, and it aims to preserve the communicator's integrity. Potter offers five maxims for giving uptake properly.At the risk of losing their essence, I translate the five maxims for practicing psychiatrists as involving the following: critical self-reflection about one's own conceptual framework and cultural context; being receptive to the patient's conceptual framework and cultural context; giving the patient the benefit of the doubt; being open to the emergence of new meanings of self-injury; and keeping a range of possible interpretative options open, rather than insisting on having the final word. We should try to understand what the world looks like from the patient's position. All of this requires some moral effort.Potter describes a number of benefits that result from giving uptake. Giving uptake is a crucial corrective to the human tendencies of becoming overly committed to prevailing societal norms and conceptual schemes (stuck in our ways), of imposing our views on others, and of silencing or distorting the communications of our patients. Giving uptake allows clinicians to be dialogically responsive and to treat patients with respect and dignity. Giving uptake fosters trust in a therapeutic relationship where clinicians do not exploit their patients' vulnerabilities. Giving... (shrink)

Background: Mental health professionals working in correctional contexts engage a double role to care and control. This dual loyalty conflict has repeatedly been criticized to impede the development of a high-quality alliance. As therapeutic alliance is a robust predictor of outcome measures of psychotherapy, it is essential to investigate the effects of this ethical dilemma. Methods: This qualitative interview study investigates patients’ perceptions of their therapists’ dual role conflict in court-mandated treatment settings. We interviewed 41 older incarcerated persons using a (...) semi-structured interview guide, the interviews were subsequently analyzed following thematic analysis. Results: We first present the patients’ perceptions of their treating psychotherapist’s dual loyalty conflict, which was linked to their overall treatment experience. In a second step, we outline the study participants’ reasons for this judgment, which were most commonly linked to feelings of trust or betrayal. More specifically, they named certain therapist characteristics and activities that enabled them to develop a trustful therapeutic alliance, which we grouped into four topics: respecting the patient’s pace and perceived coercion; patient health needs to be first priority; clarity in roles and responsibilities; and the art of communication – between transparency and unchecked information sharing. Discussion: Developing a high quality alliance in mandatory offender treatment is central due to its relationship with recovery and desistance. Our findings show that some therapists’ characteristics and activities attenuate the negative impact of their double role on the development and maintenance of the alliance. To increase the effectiveness of court-mandated treatments, we need to support clinicians in dealing with their dual role to allow the formation of a high quality therapeutic alliance. Our qualitative interview study contributed to this much-needed empirical research on therapist’ characteristics promoting a trustful relationship in correctional settings. (shrink)

Language holds great importance within clinical encounters, particularly when healthcare professionals are dealing with life-threatening diseases, such as cancer. This study is an attempt to explore the perceptions of women under treatment for breast cancer in Karachi, Pakistan, with respect to language employed by healthcare professionals for the disclosure of disease, and the impact that language used has on patients. Using exploratory qualitative methods consisting of 24 in-depth interviews with patients and one interview with a healthcare professional, this study reveals (...) various nuances of language at play. We find that in Pakistani society, there is reluctance to use the word “cancer” during the disclosure of disease by healthcare professionals, family members and patients alike due to fear of imminent death and to retain hope in patients. Instead, colloquial language, such as “rasoli [mass]” and “this illness” is used to refer to the disease. The disease is disclosed with a deliberate attempt to avoid the use of the word “cancer”, and often done in a series of steps rather than the diagnosis being spelt out bluntly, with the former practice generally preferred than the latter. Despite this manner of disclosure, patients remain aware that they are suffering from a disease. This has important implications for clinicians in Pakistan, where there are no standardized practices for breaking bad news, and where clinicians have to tailor their communication styles according to the type of patient, thus the onus rests on physicians to impart information in an empathetic manner to patients suffering from serious diseases. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Managing the Transition from Patient-Centered Care to ProtocolDavid SlakterI learned that I would need a kidney transplant in the summer of 2015. This was not a complete surprise to me, as I had been subjected to a number of tests and invasive procedures to investigate nephritis since I was a child. I had heard similar stories of clinicians performing repeated tests on my father for similar reasons without any (...) conclusions. Following my recommendation for transplant and consultation with genomics specialists, the cause of my kidney failure was determined to be Alport syndrome. What made Alport syndrome so difficult to diagnose in my case was that the associated mutation is a rare, autosomal-dominant one that has only recently been associated with the condition.After reviewing the data on survival rates for transitioning to dialysis versus a transplant, my family and I then considered the success rates for living versus cadaver donors, and the success rates at various transplant centers. The current data favor the long-term outcomes of transplant over dialysis and living over cadaver donors. Since we had decided to focus on searching for a live donor, my nephrologist recommended contacting Renewal, an organization that specializes in connecting those in need of a kidney transplant with live donors and providing support for donors to make the donation process less burdensome.On Renewal’s recommendation, my family and friends reached out across their social networks to search for potential donors. Many of those tested for compatibility were eliminated on basic matching criteria, others due to previously undiagnosed medical problems. Finally, the wife of a childhood friend came forward as an eligible donor and was also an incredibly close match on the antigens tested for kidney transplants.Having a living donor who was also a friend made the transplant experience somewhat less intimidating than it might have been. It meant the transformation of an existing relationship with someone already close to me, with fewer open questions about what may have motivated them to be so generous than if the donor had been someone I did not know. It also meant our families could be together in the waiting room, and that we shared in each other’s recoveries.Life post-transplant has been a significant improvement from what it was like immediately beforehand. Before my transplant, I regularly weighed food and consulted nutrition charts to gauge how much potassium I was consuming. To prevent too much potassium from building up in my bloodstream, I had to take sodium polystyrene [End Page 111] regularly. As one might guess from the name, it tastes much like burnt Styrofoam, and I could only ingest it with copious amounts of fruit-flavored syrup (strawberry covered up the awful flavor the best). There are other potassium binders on the market now, so fewer people with kidney failure will likely need to engage in such gustatory experimentation.I was also able to engage in more activities than what was possible even years before my transplant. I had long experienced difficulty with aerobic exercises, but assumed the reason was merely being out of shape. Though I have always walked regularly, even the one-mile walk from my office to my apartment had become a chore by the end. Within a few months after my transplant, I was riding a bicycle all over NYC, from Harlem to Brooklyn and back regularly, and hiking trails in nearby state parks. I began sessions with a personal trainer and attained a level of fitness I had not reached since I played soccer as a child.The transition from personalized care to one more driven by protocol has been a surprising and challenging aspect of the transplant process. While my previous experience with medical treatment has been individual meetings with physicians, my post-transplant care is managed by a team of nephrologists and other specialists in transplant care. My initial transplant nephrologist was automatically assigned to me. Because the standard of care for transplant patients is often driven by protocol, my assigned nephrologist recommended a biopsy on my transplanted kidney due to results in my recent lab tests. When pressed on the necessity of a biopsy in my case versus... (shrink)

Objectives: To evaluate relatives’ attitudes towards informing patients with Alzheimer’s disease about their diagnosis.Setting: A university hospital in Italy.Methods: The closest relatives of each of 71 subjects diagnosed for the first time as having AD were interviewed, using a semistructured questionnaire. Spontaneous requests by relatives not to communicate issues concerning the diagnosis were also recorded.Results: Forty three relatives spontaneously requested that patients not be fully informed. After being interviewed, nobody thought that the patient should be given all the information. Justifications (...) were related to the fear of the onset or worsening of depressive symptoms in the patient.Conclusions: In Italy relatives’ opposition to informing AD patients appears to be common. Knowledge of the relatives’ attitudes may be useful for clinicians but disclosure of diagnosis should be based on the clinical evaluation of the patient and on a prudent evaluation of the relationship between the patient and her/his relative caregiver. (shrink)