Background The significance of medical implants goes beyond technical functioning and reaches into everyday life, with consequences for individuals as well as society. Ethical aspects associated with the everyday use of implants are relevant for individuals’ lifeworlds and need to be considered in implant care and in the course of technical developments. Methods This scoping review aimed to provide a synthesis of the existing evidence regarding ethically relevant psychosocial and cultural aspects in cochlear, glaucoma and cardiovascular implants in patient-centered empirical (...) research. Systematic literature searches were conducted in EBSCOhost, Philpapers, PsycNET, Pubmed, Web of Science and BELIT databases. Eligible studies were articles in German or English language published since 2000 dealing with ethically relevant aspects of cochlear, glaucoma and passive cardiovascular implants based on empirical findings from the perspective of (prospective) implant-wearers and their significant others. Following a descriptive-analytical approach, a data extraction form was developed and relevant data were extracted accordingly. We combined a basic numerical analysis of study characteristics with a thematically organized narrative synthesis of the data. Results Sixty-nine studies were included in the present analysis. Fifty were in the field of cochlear implants, sixteen in the field of passive cardiovascular implants and three in the field of glaucoma implants. Implant-related aspects were mainly found in connection with autonomy, freedom, identity, participation and justice, whereas little to no data was found with regards to ethical principles of privacy, safety or sustainability. Conclusions Empirical research on ethical aspects of implant use in everyday life is highly relevant, but marked by ambiguity and unclarity in the operationalization of ethical terms and contextualization. A transparent orientation framework for the exploration and acknowledgment of ethical aspects in “lived experiences” may contribute to the improvement of individual care, healthcare programs and research quality in this area. Ethics-sensitive care requires creating awareness for cultural and identity-related issues, promoting health literacy to strengthen patient autonomy as well as adjusting healthcare programs accordingly. More consideration needs to be given to sustainability issues in implant development and care according to an approach of ethics-by-design. (shrink)

S. Matthew Liao and Christian Barry argue that the patient-centered approach to deontology that I have developed—the restricting claims principle —‘is beset with problems.’ They think that it cannot correctly handle cases in which a potential victim sits in the path of an agent doing what she needs to do for some greater good, or in which a person’s property is used to benefit others and harm her. They argue that cases in which an agent does what would be (...) permissible but acts on a malicious reason show that agent intentions, rather than patientclaims, are fundamental to deontology. And they claim that the RCP presupposes the means principle in a way that shows that it is not really offering anything new. I argue here that all of these charges are mistaken. Doing so allows me to offer important refinements to the RCP, to highlight two common mistakes in reasoning about cases, and to set challenges for agentcentered approaches to deontology. (shrink)

The goal of this paper is to propose a relational turn in healthcare professionalism, to improve the responsiveness of both healthcare professionals and organizations towards care of patients, but also professionals. To this end, it is important to stress the way in which difficult situations and vulnerability faced by professionals can have an impact on their performance of work. This article pursue two objectives. First, I focus on understanding and making visible shared vulnerability that arises in clinical settings from a (...) triple perspective: patient and family, health professionals, and institutions. Second, to address this challenge for professionalism, in this paper I articulate the term "relational centered-patient professionalism", which has two main axes. The relational approach means taking into account how the relationships among professionals, patients and institutions determine the constitution and evolution of those professional values. The focus on patient centered care is indispensable, because it is the ultimate goal pursued by the development of these professional values, and must always be at the center. (shrink)

Patient-centered care is now recognized as a clinical method and ideal model for patient – health professional relationships, and many definitions have influenced its evolution. Overall the patient-centered care literature has provided relatively little to define patient-centered care at the level of the patient-professional relationship. Additionally, patient-centered care lacks grounding in ethical theory. This thesis asserts that theoretical concepts from the ethics of care can provide a stronger conceptual basis for patient-centered care.This thesis begins with a critical interpretive review of (...) the patient-centered care literature, yielding 12 articles that previously introduced new theoretical and definitional work on patient-centered care and patient-centered communication. Six common themes and ideas were discovered, and include Engaging the Patient as a Whole Person, Recognizing and Responding to Emotions, Fostering a Therapeutic Alliance, Promoting an Exchange of Information, Sharing Decision Making, and Enabling Self-Management and Patient Navigation. These elements were then compared to key elements of the ethics of care. This thesis argues that feminists have good reason to consider care as a type of moral duty, and it describes how this duty functions. This thesis also argues that a duty to care is triggered when caregivers are presented with particular substantive forms of vulnerability. Specifically, this thesis argues that vulnerable subjects whose constitutive needs are at risk require particular moral obligations. The links between the ethics of care and patient-centered care are discussed, including how an ethics of care response ought to function in the health care context. Finally, the cases of J.J. and Makayla Sault, two aboriginal girls who refused chemotherapy in favour of traditional aboriginal healing practices, are analyzed. This thesis offers a short scoping review of the bioethics discourse surrounding these cases. A review of this discourse revealed several common themes, which included the peripheral importance of culture and history, the equating of best interests with survival, the supremacy of science-based medicine, and the impartial application of ethical principles. This thesis recommends that health care professionals apply an ethics of care approach to similar ethical dilemmas in the future, which involves shifting one's ethical focus to the central relationships of the case, understanding the unique perspective of the patient's narrative, and promoting a care-based rather than a justice-based approach to problem-solving. (shrink)

Health services internationally struggle to ensure health care is “person-centered” (or similar). In part, this is because there are many interpretations of “person-centered care” (and near synonyms), some of which seem unrealistic for some patients or situations and obscure the intrinsic value of patients’ experiences of health care delivery. The general concern behind calls for person-centered care is an ethical one: Patients should be “treated as persons.” We made novel use of insights from the capabilities approach to characterize person-centered (...) care as care that recognizes and cultivates the capabilities associated with the concept of persons. This characterization unifies key features from previous characterisations and can render person-centered care applicable to diverse patients and situations. By tying person-centered care to intrinsically valuable capability outcomes, it incorporates a requirement for responsiveness to individuals and explains why person-centered care is required independently of any contribution it may make to health gain. (shrink)

Despite enthusiasm for patient-centered care, the practice of patient-centered care is proving challenging. Further, it is curious that the literature about this subject does not explicitly address patient autonomy, since patients guide care in patient-centered care, and respect for patient autonomy is a prominent health-care value. We argue that by explicitly adopting a relational conception of autonomy as an essential component, patient-centered care becomes more coherent, is strengthened, and could help practitioners to make better use of a principle of respect (...) for autonomy. Hence, its use appears promising to narrow the theory–practice gap. (shrink)

This discussion paper aims to explore potential ethical and moral implications of (patient) centredness in nursing and healthcare. Healthcare is experiencing a philosophical shift from a perspective where the health professional is positioned as the expert to one that re‐centres care and service provision central to the needs and desires of the persons served. This centred approach to healthcare delivery has gained a moral authority as the right thing to do. However, little attention has been given to its moral (...) and ethical theoretical grounding and potential implications for nurses, persons served and the healthcare system. Based upon a review of academic and grey literature, centredness is proposed as a value‐laden concept in nursing inquiry. Potential moral and ethical implications of centredness on nurses/healthcare providers, persons served and the healthcare system are discussed. These challenges are then considered within the context of normative and relational ethical theories. These perspectives may offer guidance relative to how one should act in those circumstances as well as an understanding as to how interdependency and engagement with the other person(s) can help navigate the challenges of a centred care approach. Viewing centredness through an ethical theoretical lens provides a valuable discourse to nursing in efforts to expand the knowledge base and integrate centred approaches into practice and policy. (shrink)

Health services internationally struggle to ensure health care is “person-centered” (or similar). In part, this is because there are many interpretations of “person-centered care” (and near synonyms), some of which seem unrealistic for some patients or situations and obscure the intrinsic value of patients’ experiences of health care delivery. The general concern behind calls for person-centered care is an ethical one: Patients should be “treated as persons.” We made novel use of insights from the capabilities approach to characterize person-centered (...) care as care that recognizes and cultivates the capabilities associated with the concept of persons. This characterization unifies key features from previous characterisations and can render person-centered care applicable to diverse patients and situations. By tying person-centered care to intrinsically valuable capability outcomes, it incorporates a requirement for responsiveness to individuals and explains why person-centered care is required independently of any contribution it may make to health gain. (shrink)

Since the 1970’s epidemiological measures focusing on “health-related quality of life” or simply “quality of life” have figured increasingly as endpoints in clinical trials. Before the 1970’s these measures were known, generically, as performance measures or health status measures. Relabeled as “quality of life measures” they were first used in cancer trials. In the early 2000’s they were relabeled again as “patient-reported outcome measures” or PROMs, in their service to the FDA to support drug labeling claims. To the limited degree (...) that the philosophical literature addresses these measures, it tends to associate them with two major theories of well-being: subjective well-being and the capabilities approach. In this paper, I argue that philosophers ought to treat quality of life measures/proms as a distinct from these theories. I argue that quality of life/proms serve healthcare as vehicles for patient-centered care and this has important consequences for how we theorize these measures. To this end, two requirements set them apart from measures of subjective well-being and the capabilities approach: quality of life/proms need to be patient-directed and inclusive. (shrink)

In 2010, historian Susan Reverby made public her discovery of the now notorious U.S.–Guatemalan S.T.D. experiments. More than 1300 Guatemalans had been intentionally exposed to syphilis, gonorrhea, and/or canchroid in nonconsensual experiments funded by Johns Hopkins, the Rockefeller Foundation, Bristol Myers-Squibb, and Mead Johnson and carried out by the U.S.P.H.S and Guatemalan health officials in collaboration with the Pan American Health Organization in 1946–48. The purpose of the experiments was to help develop more effective means of preventing and diagnosing STDs. (...) Subjects included prisoners, sex workers, military personnel, and psychiatric patients. The experiments included exposure to STDs through... (shrink)

The aim of this study was to explore patients’ experiences of using the Integrated Palliative care Outcome Scale (IPOS) during specialized palliative home care. The study adopted a qualitative approach with an interpretive descriptive design. Interviews were performed with 10 patients, of whom a majority were diagnosed with incurable cancer. Our findings suggest that the use of IPOS as a basis for conversation promotes safe care by making the patients feel confident that the care provided was adapted to them (...) which gives them a sense of safety. IPOS facilitated discussions between patients and nurses about care needs. The patients believed that using IPOS enabled reflection on their well‐being and life situation. In conclusion, the study finds that using IPOS is beneficial and provide ways to enable person‐centered care and with advantage could be used in specialized palliative home care. The results may help overcome barriers and facilitate the use of patient‐reported outcome measures (PROMs). To enable the use of PROMs such as IPOS in palliative home care, nurses need education and opportunities to develop routines that enable patients’ voice to be heard and thereby compose a basis for care. (shrink)

The long-standing tradition of phenomenological psychopathology has been historically concerned with the nature of mental disorders, with a special focus on their basic experiential core. In the same way, much of the recent phenomenologically-inspired work in psychopathology consists in providing precise and refined tools for diagnosis, classification, and nosology of mental disorders. What is striking, however, is the lack of therapeutic proposals in this tradition. Although a number of phenomenological approaches refer positively to psychotherapeutic practices, psychopharmacological intervention has been mostly (...) neglected as a relevant field of attention. This work aims to fill this gap. We maintain that the convergence of phenomenological psychopathology and psychopharmacology exhibit a rich potential for mutual enlightenment, which unfolds into a more adequate psychopharmacological practice. Initially, after discussing Joanna Moncrieff’s drug-centered model of drug action we review some of the major findings in phenomenological literature regarding psychopharmacological treatment. Next, we suggest that Moncrieff’s drug-centered model can be seen as an important tool for improving clinical decision-making, by elucidating its inherent epistemic advantage when compared to mainstream models of drug action. As a result, the drug-centered model proves to be also patient-centered, by focusing on experiential alterations and helping to improve treatment outcomes. (shrink)

There is an alarming trend in the field of medicine, whose portents are ominous but do not seem to shake the complacency and merry making doing the rounds. The wants of the medical man have multiplied beyond imagination. The cost of organizing conferences is no longer possible on delegate fees. The bottom-line is: Crores for a Conference, Millions for a Mid-Term. However, the problem is that sponsors keep a discreet but careful tab on docs. All in all, costs of medicines (...) escalate, and quality medical care becomes a luxury. The whole brunt of this movement is borne by the patient. Companies like GlaxoSmithKline, Bayer, Pfizer, Bristol-Myers Squibb, AstraZeneca, Schering-Plough, Abbott Labs, TAP Pharmaceuticals, Wyeth and Merck have paid millions of dollars each as compensation in the last few years. The financial condition of many pharmaceutical majors is not buoyant either. Price deflation, increased Rand D spending, and litigation costs are the main reasons. In the future, the messy lawsuits situation would no longer be restricted to industry. It would involve academia and practising doctors as well. Indian pharma industry captains, who were busy raking in the profits at present, would also come under the scanner. If nothing else, it means industry and docs will have to sit down and do some soul searching. Both short and long-term measures will have to be put into place. Short-term measures involve reduction in i) pharma spending over junkets and trinkets; ii) hype over 'me too' drugs; iii) manipulation of drug trials; iv) getting pliant researchers into drug trials; iv) manipulation of Journal Editors to publish positive findings about their drug trials and launches; v) and for Indian Pharma, to conduct their own unbiased clinical trial of the latest drug projected as a blockbuster in the West, before pumping in their millions. The long-term measures are related to the way biomedical advance is to be charted. We have to decide whether medicine is to become a corporate enterprise or remain a patient welfare centered profession. A third approach involves an eclectic resolution of the two. Such amount of patient welfare as also ensures profit, and such amount of profit as also ensures patient welfare is to be forwarded. For, profit, without patient welfare, is blind. And patient welfare, without profit, is lame. According to this approach, medicine becomes a patient welfare centered professional enterprise. The various ramifications of each of these approaches are discussed in this monograph. (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 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)

In the latter half of the 20th century, Western medicine moved death from the home to the hospital. As a result, the process of dying seems to have lost its spiritual dimension, and become a matter of prolonging material life by means of medical technology. The novel quandaries that arose led in turn to medico-legal regulation. This paper describes the recent regulation of dying in Israel under its Dying Patient Law, 2005. The Law recognizes advance directives in principle, but limits (...) their effect and form through complex medico-legal artifices. It reflects a culture that places high value on both scientific medicine and the sanctity of life as such, and illustrates a medical culture that pitches battle against death. At the same time, the Law constructs the will of the individual in a medico-legal language that is alien to the lay person. The paper suggests an alternative approach to advance care planning that is patient-centred and addresses the psycho-social needs of the individual in terms of her relational autonomy. From this perspective, advance care planning becomes an opportunity to extract the patient from the medical context and allow her to speak about her approaching death with close ones in her own terms of reference. To this end, there is a need for facilitation of an intimate encounter where patients can speak about their concerns with their loved ones. The paper also presents a methodological approach of attentive listening, which can be applied across diverse cultures and circumstances. (shrink)

This article argues that standard models of person-centred care (PCC) and shared decision making (SDM) rely on simplistic, often unrealistic assumptions of patient capacities that entail that PCC/SDM might have detrimental effects in many applications. We suggest a complementary PCC/SDM approach to ensure that patients are able to execute rational decisions taken jointly with care professionals when performing self-care. Illustrated by concrete examples from a study of adolescent diabetes care, we suggest a combination of moral and psychological considerations to (...) support the claim that standard PCC/SDM threatens to systematically undermine its own goals. This threat is due to a tension between the ethical requirements of SDM in ideal circumstances and more long-term needs actualized by the context of self-care handled by patients with limited capacities for taking responsibility and adhere to their own rational decisions. To improve this situation, we suggest a counseling, self-care, adherence approach to PCC/SDM, where more attention is given to how treatment goals are internalized by patients, how patients perceive choice situations, and what emotional feedback patients are given. This focus may involve less of a concentration on autonomous and rational clinical decision making otherwise stressed in standard PCC/SDM advocacy. (shrink)

The patient’s home is a common setting for palliative care. This means that we need to understand current palliative care philosophy and how its goals can be realized in home‐care nursing encounters (HCNEs) between the nurse, patient and patient’s relatives. The existing research on this topic describes both a negative and a positive perspective. There has, however, been a reliance on interview and descriptive methods in this context. The aim of this study was to explore planned HCNEs in palliative care. (...) The design was a multiple case study based on observations. The analysis includes a descriptive and an explanation building phase. The results show that planned palliative HCNEs can be described as a process of co‐creating possibilities for the patient to reach vital goals through shared knowledge in a warm and caring atmosphere, based on good caring relations. However, in some HCNEs, co‐creation did not occur: Wishes and needs were discouraged or made impossible and vital goals were not reached for the patients or their relatives. Further research is needed to understand why. The co‐creative process presented in this article can be seen as a concretization of the palliative care ideal of working with a person‐centered approach. (shrink)

Background Standard interpretations of the ethical principle of respect for persons have not incorporated the views and values of patients, especially patients from groups underrepresented in research. This limits the ability of research ethics scholarship, guidance, and oversight to support inclusive, patient-centered research. This study aimed to identify the practical approaches that patients in community-based settings value most for conveying respect in genomics research. Methods We conducted a 3-round, web-based survey using the modified Delphi technique to identify areas of agreement (...) among English-speaking patients at primary care clinics in Washington State and Idaho who had a personal or family history of cancer. In Round 1, respondents rated the importance of 17 items, identified in prior qualitative work, for feeling respected. In Round 2, respondents re-rated each item after reviewing overall group ratings. In Round 3, respondents ranked a subset of the 8 most highly rated items. We calculated each item’s mean and median rankings in Round 3 to identify which approaches were most important for feeling respected in research. Results Forty-one patients consented to the survey, 21 (51%) completed Round 1, and 18 (86% of Round 1) completed each of Rounds 2 and 3. Two sets of rankings were excluded from analysis as speed of response suggested they had not completed the Round 3 ranking task. Respondents prioritized provision of study information to support decision-making (mean ranking 2.6 out of 8; median ranking 1.5) and interactions with research staff characterized by kindness, patience, and a lack of judgment (mean ranking 2.8; median ranking 2) as the most important approaches for conveying respect. Conclusions Informed consent and interpersonal interactions are key ways that research participants experience respect. These can be supported by other approaches to respecting participants, especially when consent and/or direct interactions are infeasible. Future work should continue to engage with patients in community-based settings to identify best practices for research without consent and examine unique perspectives across clinical and demographic groups in different types of research. (shrink)

The more we know about medicine, the more we realize that many health questions have no one true answer. Realizing this, and thinking carefully about how medicine asks patients to treat their conditions, leads us to some questions. How reliable are the guidelines that might form the basis of doctors’ advice? Is it wrong, after all, to base an approach to medicine on patients’ preferences? And, given that there is often a distance between the treatment a doctor advises and (...) what a patient would like to do, how do we bridge the gap—especially in a health culture of inequality, technical proficiency, and increasing costs? In practical, engaging, narrative-driven chapters about common health conditions that millions of Americans are familiar with—depression and high blood pressure, arthritis and diabetes—Dr. Zackary Berger of Johns Hopkins demystifies the often bewildering disconnect between patients and doctors and asks us all to think more clearly about how best to protect and cure the human body. (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.

Background Mental health nurses advocate for patients through a person-centered approach because they care for people experiencing mental distress who tend to be limited to exercising their human rights and autonomy through interpersonal relationships. Therefore, it is necessary to provide high-quality person-centered care for these patients by identifying the influencing factors. Aim This study aims to identify the factors affecting mental health nurses in performing person-centered care for patients. Research design This study had a cross-sectional, descriptive-correlational survey design. Participants (...) and method Nurses ( N = 166) working at psychiatric wards in Korea completed an online questionnaire on moral sensitivity, attitudes toward people with mental illness, and person-centered care. The t-test and stepwise multiple regression analysis were used. Ethical considerations Ethical approval for the study was obtained from the relevant ethics committee. Findings Moral sensitivity was a significant factor correlating with the provision and perception of person-centered care. Attitudes toward patients had no effect on person-centered care. The predictor variables for the provision of person-centered care (R2 = 0.247) were moral sensitivity (β = 0.33), having a professional qualification (β = 0.19), marital status (β = 0.18), and closed ward (β = −0.15). The predictor variables for the perception of person-centered (R2 = 0.150) care were closed ward (β = −0.25), moral sensitivity (β = 0.23), and marital status (β = 0.18). Discussion and conclusion Mental health nurses can strengthen person-centered care by improving moral sensitivity related to the ethical aspect of nursing and professional competence to address the complex needs of patients. Person-centered care needs to be applied more carefully in closed wards where human rights issues may arise. Through these efforts, the dignity of patients can be protected. (shrink)

Engaging patients in research conduct and agenda setting is increasingly considered as an ethical imperative, and a way to transcend views of patients as passive subjects by fostering their empowerment. However, patient engagement in research is still an emerging approach with debated definitional and operational frameworks. This song addresses the sometimes difficult encounter and elusive mutual understanding between researchers and patients. “What is PER?” is an impressionistic illustration of the challenges and issues that can be found in the universe (...) of patient engagement in research. (shrink)

Engaging patients in research conduct and agenda setting is increasingly considered as an ethical imperative, and a way to transcend views of patients as passive subjects by fostering their empowerment. However, patient engagement in research is still an emerging approach with debated definitional and operational frameworks. This song addresses the sometimes difficult encounter and elusive mutual understanding between researchers and patients. “What is PER?” is an impressionistic illustration of the challenges and issues that can be found in the universe (...) of patient engagement in research. (shrink)

The Swedish welfare debate increasingly focuses on market liberal notions and its healthcare perspective aims for more patient‐centered care. This article examines the new Swedish Patient Act describing and analyzing how the patient is constructed in government documents. This study takes a Foucauldian discourse analysis approach following Willig's analysis guide. The act contains an entitlement discourse for patients and a requirement discourse for healthcare personnel. These two discourses are governed by a values‐based healthcare discourse. Neo‐liberal ideology, in the (...) form of New Public Management discourse, focusing on the value of efficiency and competition, is given a hegemonic position as laws and regulations are used to strengthen it. The new Swedish Patient Act seems to further strengthen this development. The Act underlines the increased entitlement for patients, but it is not legally binding as it offers patients only indirect entitlement to influence and control their care. To safeguard the patient's entitlement under the Patient Act, healthcare personnel should be made aware of the contents of the Act, so that they can contribute to the creation of systems and working methods that facilitate respect of the Act's provisions in daily healthcare work. (shrink)

Advocates of the Person-Centered Healthcare (PCH) approach say that PCH is a response to a failure of caring for patients as persons. Nevertheless, there are many human subjects falling to fulfill the requirements of a traditional philosophical definition of personhood. Hence, if we take, PCH seriously, a greater clarification of the key terminology of PCH is urgently needed. It seems necessary, for instance, that the concept of the person should be extended in order to include those individuals with insipient (...) or immature levels of consciousness, as well as those who are severely and permanently mentally handicapped. In this article, we will depart from some well-known philosophical concepts of what it means to be a person and try to offer a broader and more inclusive meaning. We suggest that persons are human beings with a socially recognized biography, which implies to recognize as persons individuals with necessities, but also with narratives about their interests and claims, expressed sometimes by other people related to them. This is particularly the case of individuals that suffer from severe disorders of consciousness. For those, is not only care that matters; respect matters too. Caregivers should therefore not only sympathetically care for the well-being of these people; they should also be concerned to respect their interests and claims by interpreting them empathetically, in the light of their biographical story. Our conclusion is that, in order to be coherent, PCH must consider individuals with severe disorders of consciousness as persons and we think that our revised concept of personhood fits with this requirement. (shrink)

This study focuses on change strategies generated through a dialogical–reflexive–participatory process designed to improve the care of families of critically ill patients in an intensive care unit (ICU) using a participatory action research in a tertiary hospital in the Balearic Islands (Spain). Eleven professionals (representatives) participated in 11 discussion groups and five in‐depth interviews. They represented the opinions of 49 colleagues (participants). Four main change strategies were created: (i) Institutionally supported practices were confronted to make a shift from professional‐centered work (...) to a more inclusive, patient‐centered approach; (ii) traditional power relations were challenged to decrease the hierarchical power differences between physicians and nurses; (iii) consensus was built about the need to move from an individual to a collective position in relation to change; and (iv) consensus was built about the need to develop a critical attitude toward the conservative nature of the unit. The strategies proposed were both transgressive and conservative; however, when compared with the initial situation, they enhanced the care offered to patients' relatives and patient safety. Transforming conservative settings requires capacity to negotiate positions and potential outcomes. However, when individual critical capacities are articulated with a new approach to micropolitics, transformative proposals can be implemented and sustained. (shrink)

:Influenced by the people-centered integrated care model, Healthy China 2030 was drafted recently with a special concern given to patient engagement. Although there are three levels of engagement, patients are more likely to be empowered and activated through an individualistic approach. Thus, engaging patients at the household level appear to have been overlooked so far. Supported by ethical values and practical evidence, this article attempts to address the importance of engaging patients at the household level in shaping the Chinese (...) healthcare system with the PCIC model orientation, and thus recommends four strategies for empowering and activating patients at the household level in the Chinese context. (shrink)

Although current literature about the “cure versus care” issue tends to promote a patient-centered approach, the disease-centered approach remains the prevailing model in practice. The perceived dichotomy between the two approaches has created a barrier that could make it difficult for medical students and physicians to integrate psychosocial aspects of patient care into the prevailing disease-based model. This article examines the influence of the formal and hidden curricula on the perception of these two approaches and finds that the (...) hidden curriculum perpetuates the notion that “cure” and “care” based approaches are dichotomous despite significant changes in formal curricula that promote a more integrated approach. The authors argue that it is detrimental for clinicians to view the two approaches as oppositional rather than complementary and attempt to give recommendations on how the influence of the hidden curriculum can be reduced to get a both-cure-and-care-approach, rather than an either-cure-or-care-approach. (shrink)

Bioethics is a relatively new addition to bedside medical care in Arab world which is characterized by a special culture that often makes blind adaptation of western ethics codes and principles; a challenge that has to be faced. To date, the American University of Beirut Medical Center is the only hospital that offers bedside ethics consultations in the Arab Region aiming towards better patient-centered care. This article tackles the role of the bedside clinical ethics consultant as an active member of (...) the medical team and the impact of such consultations on decision-making and patient-centered care. Using the case of a child with multiple medical problems and a futile medical condition, we describe how the collaboration of the medical team and the clinical ethics consultant took a comprehensive approach to accompany and lead the parents and the medical team in their decision-making process and how the consultations allowed several salient issues to be addressed. This approach proved to be effective in the Arab cultural setting and indeed did lead to better patientcentered care. (shrink)

There is a critical need to establish a space to engage in careful deliberation amid exciting, important, necessary, and groundbreaking technological and clinical advances in pediatric medicine. Extracorporeal membrane oxygenation (ECMO) is one such technology that began in pediatric settings nearly 50 years ago. And while not void of medical and ethical examination, both the symbolic progression of medicine that ECMO embodies and its multidimensional challenges to patient care require more than an intellectual exercise. What we illustrate, then, is a (...) person-centered framework that incorporates the philosophy and practice of palliative care and care-based ethical approaches. This person-centered framework is valuable for identifying and understanding challenges central to ECMO, guides collaborative decision-making, and recognizes the value of relationships within and between patients, families, healthcare teams, and others who impact and are impacted by ECMO. Specifically, this person-centered approach enables caregivers to provide compassionate and effective support in critical, and often urgent, situations where conflicts may emerge among healthcare team members, families, and other decision makers. By reflecting on three cases based on actual situations, we apply our person-centered framework and identify those aspects that were utilized in and informed this project. We aim to fill a current gap in the pediatric ECMO literature by presenting a person-centered framework that promotes caregiving relationships among hospitalized critically ill children, families, and the healthcare team and is supported through the philosophy and practice of palliative care and clinical ethics. (shrink)

BackgroundThe emergence of artificial intelligence (AI) in medicine has prompted the development of numerous ethical guidelines, while the involvement of patients in the creation of these documents lags behind. As part of the European PROFID project we explore patient perspectives on the ethical implications of AI in care for patients at increased risk of sudden cardiac death (SCD).AimExplore perspectives of patients on the ethical use of AI, particularly in clinical decision-making regarding the implantation of an implantable cardioverter-defibrillator (ICD).MethodsSemi-structured, future scenario-based (...) interviews were conducted among patients who had either an ICD and/or a heart condition with increased risk of SCD in Germany (n = 9) and the Netherlands (n = 15). We used the principles of the European Commission’s Ethics Guidelines for Trustworthy AI to structure the interviews.ResultsSix themes arose from the interviews: the ability of AI to rectify human doctors’ limitations; the objectivity of data; whether AI can serve as second opinion; AI explainability and patient trust; the importance of the ‘human touch’; and the personalization of care. Overall, our results reveal a strong desire among patients for more personalized and patient-centered care in the context of ICD implantation. Participants in our study express significant concerns about the further loss of the ‘human touch’ in healthcare when AI is introduced in clinical settings. They believe that this aspect of care is currently inadequately recognized in clinical practice. Participants attribute to doctors the responsibility of evaluating AI recommendations for clinical relevance and aligning them with patients’ individual contexts and values, in consultation with the patient.ConclusionThe ‘human touch’ patients exclusively ascribe to human medical practitioners extends beyond sympathy and kindness, and has clinical relevance in medical decision-making. Because this cannot be replaced by AI, we suggest that normative research into the ‘right to a human doctor’ is needed. Furthermore, policies on patient-centered AI integration in clinical practice should encompass the ethics of everyday practice rather than only principle-based ethics. We suggest that an empirical ethics approach grounded in ethnographic research is exceptionally well-suited to pave the way forward. (shrink)

The prospective robots in healthcare intended to be included within the conclave of the nurse-patient relationship—what I refer to as care robots—require rigorous ethical reflection to ensure their design and introduction do not impede the promotion of values and the dignity of patients at such a vulnerable and sensitive time in their lives. The ethical evaluation of care robots requires insight into the values at stake in the healthcare tradition. What’s more, given the stage of their development and lack of (...) standards provided by the International Organization for Standardization to guide their development, ethics ought to be included into the design process of such robots. The manner in which this may be accomplished, as presented here, uses the blueprint of the Value-sensitive design approach as a means for creating a framework tailored to care contexts. Using care values as the foundational values to be integrated into a technology and using the elements in care, from the care ethics perspective, as the normative criteria, the resulting approach may be referred to as care centered value-sensitive design. The framework proposed here allows for the ethical evaluation of care robots both retrospectively and prospectively. By evaluating care robots in this way, we may ultimately ask what kind of care we, as a society, want to provide in the future. (shrink)

A paramount, yet unresolved issue in personalised medicine is that of automated reasoning with clinical guidelines in multimorbidity settings. This entails enabling machines to use computerised generic clinical guideline recommendations and patient-specific information to yield patient-tailored recommendations where interactions arising due to multimorbidities are resolved. This problem is further complicated by patient management desiderata, in particular the need to account for patient-centric goals as well as preferences of various parties involved. We propose to solve this problem of automated reasoning with (...) interacting guideline recommendations in the context of a given patient by means of computational argumentation. In particular, we advance a structured argumentation formalism ABA+G (short for Assumption-Based Argumentation with Preferences (ABA+) and Goals) for integrating and reasoning with information about recommendations, interactions, patient’s state, preferences and prioritised goals. ABA+G combines assumption-based reasoning with preferences and goal-driven selection among reasoning outcomes. Specifically, we assume defeasible applicability of guideline recommendations with the general goal of patient well-being, resolve interactions (conflicts and otherwise undesirable situations) among recommendations based on the state and preferences of the patient, and employ patient-centered goals to suggest interaction-resolving, goal-importance maximising and preference-adhering recommendations. We use a well-established Transition-based Medical Recommendation model for representing guideline recommendations and identifying interactions thereof, and map the components in question, together with the given patient’s state, prioritised goals, and preferences over actions, to ABA+G for automated reasoning. In this, we follow principles of patient management and establish corresponding theoretical properties as well as illustrate our approach in realistic personalised clinical reasoning scenaria. (shrink)

Ensuring adequate informed consent for surgery in a trauma setting is challenging. We developed and pilot tested an educational video containing information regarding the informed consent process for surgery in trauma patients and a knowledge measure instrument and evaluated whether the audiovisual presentation improved the patients’ knowledge regarding their procedure and aftercare and their satisfaction with the informed consent process. A modified Delphi technique in which a panel of experts participated in successive rounds of shared scoring of items to forecast (...) outcomes was applied to reach a consensus among the experts. The resulting consensus was used to develop the video content and questions for measuring the understanding of the informed consent for debridement surgery in limb trauma patients. The expert panel included experienced patients. The participants in this pilot study were enrolled as a convenience sample of adult trauma patients scheduled to receive surgery. The modified Delphi technique comprised three rounds over a 4-month period. The items given higher scores by the experts in several categories were chosen for the subsequent rounds until consensus was reached. The experts reached a consensus on each item after the three-round process. The final knowledge measure comprising 10 questions was developed and validated. Thirty eligible trauma patients presenting to the Emergency Department were approached and completed the questionnaires in this pilot study. The participants exhibited significantly higher mean knowledge and satisfaction scores after watching the educational video than before watching the video. Our process is promising for developing procedure-specific informed consent and audiovisual aids in medical and surgical specialties. The educational video was developed using a scientific method that integrated the opinions of different stakeholders, particularly patients. This video is a useful tool for improving the knowledge and satisfaction of trauma patients in the ED. The modified Delphi technique is an effective method for collecting experts’ opinions and reaching a consensus on the content of educational materials for informed consent. Institutions should prioritize patient-centered health care and develop a structured informed consent process to improve the quality of care. The ClinicalTrials.gov Identifier is NCT01338480. The date of registration was April 18, 2011. (shrink)

Background Ensuring adequate informed consent for surgery in a trauma setting is challenging. We developed and pilot tested an educational video containing information regarding the informed consent process for surgery in trauma patients and a knowledge measure instrument and evaluated whether the audiovisual presentation improved the patients’ knowledge regarding their procedure and aftercare and their satisfaction with the informed consent process. Methods A modified Delphi technique in which a panel of experts participated in successive rounds of shared scoring of items (...) to forecast outcomes was applied to reach a consensus among the experts. The resulting consensus was used to develop the video content and questions for measuring the understanding of the informed consent for debridement surgery in limb trauma patients. The expert panel included experienced patients. The participants in this pilot study were enrolled as a convenience sample of adult trauma patients scheduled to receive surgery. Results The modified Delphi technique comprised three rounds over a 4-month period. The items given higher scores by the experts in several categories were chosen for the subsequent rounds until consensus was reached. The experts reached a consensus on each item after the three-round process. The final knowledge measure comprising 10 questions was developed and validated. Thirty eligible trauma patients presenting to the Emergency Department were approached and completed the questionnaires in this pilot study. The participants exhibited significantly higher mean knowledge and satisfaction scores after watching the educational video than before watching the video. Conclusions Our process is promising for developing procedure-specific informed consent and audiovisual aids in medical and surgical specialties. The educational video was developed using a scientific method that integrated the opinions of different stakeholders, particularly patients. This video is a useful tool for improving the knowledge and satisfaction of trauma patients in the ED. The modified Delphi technique is an effective method for collecting experts’ opinions and reaching a consensus on the content of educational materials for informed consent. Institutions should prioritize patient-centered health care and develop a structured informed consent process to improve the quality of care. Trial registration The ClinicalTrials.gov Identifier is NCT01338480. The date of registration was April 18, 2011. (shrink)

Today, there is a considerable interest in phenomenology within psychiatric academic communities as well as among clinical practitioners; as a result, a growing number of institutions demonstrate their commitment to phenomenology as a privileged speculative companion. The main focus of existing teaching programs in phenomenology is usually placed on psychopathological issues and on describing the experience of mental illness from a non-naturalistic and person-centered perspective. In this article, I argue that phenomenological training should also be focused on the role of (...) the psychiatrist in providing such a phenomenologically informed patient-centered approach. In this perspective, phenomenological interviews such as EASE, EAWE and EAFI appear to be a particularly relevant form of training, as they allow the trainee to engage actively in the learning process. To focus on the person of the psychiatrist allows, however, to reconsider the meaning of the clinician’s neutrality, advocated by the authors of the phenomenological interviews. The attitude produced by adopting the phenomenological approach should instead be described as a particular reflective attitude which allows for paying attention to the embodied dimension of experience. This attitude differs from both the neutrality associated with the objectivity of classic psychiatry, and the neutrality to which a psychoanalyst strives. By taking into account embodied awareness as characteristic of phenomenological attitude, one then may address, through training, the specifics of phenomenological practice, such as its unstable and laborious nature, its integration in the lived experience, and the challenge that it poses to the psychiatrist’s scientific background. (shrink)

Advanced AI systems are rapidly making their way into medical research and practice, and, arguably, it is only a matter of time before they will surpass human practitioners in terms of accuracy, reliability, and knowledge. If this is true, practitioners will have a prima facie epistemic and professional obligation to align their medical verdicts with those of advanced AI systems. However, in light of their complexity, these AI systems will often function as black boxes: the details of their contents, calculations, (...) and procedures cannot be meaningfully understood by human practitioners. When AI systems reach this level of complexity, we can also speak of black-box medicine. In this paper, we want to argue that black-box medicine conflicts with core ideals of patient-centered medicine. In particular, we claim, black-box medicine is not conducive for supporting informed decision-making based on shared information, shared deliberation, and shared mind between practitioner and patient. (shrink)

Obtaining adequate informed consent from trauma patients is challenging and time-consuming. Healthcare providers must communicate complicated medical information to enable patients to make informed decisions. This study aimed to explore the challenges of obtaining valid consent and methods of improving the quality of the informed consent process for surgical procedures in trauma patients. We conducted a systematic review of relevant English-language full-text original articles retrieved from PubMed that had experimental or observational study design and involved adult trauma patients. Studies involving (...) informed consent in clinical or research trials were excluded. Titles and abstracts of searched articles were reviewed and relevant data were extracted with a structured form. Results were synthesized with a narrative approach. A total of 2044 articles were identified in the initial search. Only eight studies were included in the review for narrative synthesis. Six studies involved orthopedic surgeries, one involved nasal bone surgeries, and one involved trauma-related limb debridement. Only one study was conducted in an emergency department. Information recall was poor for trauma patients. Risk recall and comprehension were greater when written or video information was provided than when information was provided only verbally. Patient satisfaction was also greater when both written and verbal information were provided than when verbal information alone was provided; patients who received video information were more satisfied than patients who received written or verbal information. Many articles have been published on the subject of informed consent, but very few of these have focused on trauma patients. More empirical evidence is needed to support the success of informed consent for trauma patients in the emergency department, especially within the necessarily very limited time frame. To improve the informed consent process for trauma patients, developing a structured and standardized informed consent process may be necessary and achievable; its effectiveness would require evaluation. Adequately educating and training healthcare providers to deliver structured, comprehensive information to trauma patients is crucial. Institutions should give top priority to ensuring patient-centered health care and improved quality of care for trauma patients. (shrink)

Patients and their physicians frequently make important health care decisions with incomplete information. Memory fails; records are incomplete; the onset of significant events is confused with other life stories; and even the most basic information about medications, laboratory tests, allergies, and problems is often the result of guesswork. As providers and as patients, we suffer because information vital to health care is not available when and where it is needed. Data required for care are dispersed across various settings and represented (...) in a range of formats; incentives to bring these data together do not exist.In recent years, four specific approaches have emerged to address patient-centered information access. The first model attempts to consolidate all care into a single care delivery and financing system. This model — prevalent in many European countries — is to some degree extant at Kaiser-Permanente and other integrated care and financing systems. This model is ideal if and when one organization is responsible for all care delivery and financing. Such models present “one-stop shopping” for managing health information, coordinating care, communicating with providers and support groups, and ensuring both payment and accountability. (shrink)

The aim of the study was to explore heterogeneity of change in state affect following the introduction of insulin therapy in patients with type 2 diabetes. State affect was assessed twice among 305 patients: just before the introduction of insulin therapy and at 1-month follow-up. Latent class growth modeling showed that negative affect increased in 78% of the sample, whereas positive affect improved in only 17% of the participants. On the basis of cross-tabulation of these changes a 4-class model of (...) emotional response to the new treatment was obtained. The largest subgroup of participants manifested “threat response”, i.e. moderate-stable PA with increase in NA. Participants in the “challenge response” subgroup showed increases in both NA and PA. The third class characterized by “no response”, had low-stable NA and moderate-stable PA. The smallest “stress response” subgroup showed increase in NA and high-stable PA. Gender, age and education level were significant covariates of group membership. Thus, the findings revealed heterogeneous emotional response to the new treatment, which may be of clinical relevance for improving diabetic patients’ adjustment through a more individual, person-centered approach. (shrink)

The prospective robots in healthcare intended to be included within the conclave of the nurse-patient relationship—what I refer to as care robots—require rigorous ethical reflection to ensure their design and introduction do not impede the promotion of values and the dignity of patients at such a vulnerable and sensitive time in their lives. The ethical evaluation of care robots requires insight into the values at stake in the healthcare tradition. What’s more, given the stage of their development and lack of (...) standards provided by the International Organization for Standardization to guide their development, ethics ought to be included into the design process of such robots. The manner in which this may be accomplished, as presented here, uses the blueprint of the Value-sensitive design approach as a means for creating a framework tailored to care contexts. Using care values as the foundational values to be integrated into a technology and using the elements in care, from the care ethics perspective, as the normative criteria, the resulting approach may be referred to as care centered value-sensitive design. The framework proposed here allows for the ethical evaluation of care robots both retrospectively and prospectively. By evaluating care robots in this way, we may ultimately ask what kind of care we, as a society, want to provide in the future. (shrink)

The concept of person‐centeredness has become in many instances the standard of health care that humanises services and ensures that the patient/client is at the centre of care delivery. Rejecting a purely biomedical explanation of dementia that led to a loss of self, personhood in dementia could be maintained through social interaction and communication. In this article, we use the insights of queer theory to contribute to our current understanding of the care of those with dementia. We critically discuss the (...) concepts of person and personhood that have become the cornerstone values of person‐centred care for persons with dementia (PWD). Some critics, using queer theory as a theoretical approach, contend that person‐centred care often (unwittingly) reproduces heteronormative roles in trying to sustain life histories. In doing so, they argue, regendering of PWD is sometimes enforced by care providers who try to safeguard this biographical continuity. Cultural theorist Linn Sandberg also mentions that other axes of domination such as race and class are not conceptualised in person‐centeredness approaches, and neither are power asymmetries. Thus, in our article, we revisit the concept of person‐centred care as a first step in proposing another way to think about ‘beings with dementia’ (to avoid the term person). Believing that queer theorists have fallen short in questioning the idea of person or personhood as such, we will build on and broaden Sandberg's critique by demonstrating that queer and crip theory can be understood as a fundamental critique of the (Western) subject and processes of subjectivation. We argue that dementia can be conceptualised as a radical break not only with gendered roles and embodiments, but with many of the norms that make us recognisable subjects. Conceptualising dementia in this way turns it into what Sandberg called an ‘emancipatory space’ and not merely a pathology. (shrink)

In response to cancer, patients may be thrown into precarious processes of remaking their purpose, identity, and connections to the world around them. Thoughtful and thorough responses to these issues can be supported by person-centered phenomenological approaches to caring for patients. The importance of perspectives on illness offered by theoretical phenomenology will become apparent through the example of the experience of nausea, or perhaps more accurately put—chemo sickness. The focus here is on how chemo sickness alters one's way of relating (...) to the world. I will examine the phenomenon of nausea through the lens of the phenomenological concept of mood—an existential feeling that engenders a diffused tone permeating through one's world and shapes the envisioned possibilities on one's horizon. (shrink)

Health-related quality of life measures aim to assess patients’ subjective experience in order to gauge an increasingly wide variety of health care issues such as patient needs; satisfaction; side effects; quality of care; disease progression and cost effectiveness. Their popularity is undoubtedly due to a larger initiative to provide patient-centered care. The use of patient perspectives to guide health care improvements and spending is rooted in the idea that we must respect patients as self-determining agents. In this paper I look (...) at the two main orientations to quality of life measurement: standardized and individualized measures. I argue that while these measures are attempts to provide for patient self-determination, they both fail to do so. In their place I suggest a new approach which overcomes their respective difficulties: a dialogic approach. (shrink)

The dominant approach to the subjectivity of the clinician in psychiatry is a negative one. Based on the idea of objectivity as "a view from nowhere", contemporary psychiatry stipulates that the psychiatrist's impressions and emotions may only interfere with the results of the psychiatric examination. Even the person-centered approach in psychiatry fails to address this issue directly because it focuses almost exclusively on the person of the patient. A positive approach to the psychiatrist's subjective experience has not (...) achieved wide recognition and has only been adopted in psychotherapy and in particular in psychoanalysis and psychodynamic psychotherapy. Psychoanalysts were, indeed, the first to... (shrink)

This article offers commentary on a work in the same journal issue. I argue that the authors, Entwistle and Watt, approach person-centered care in health care with a questionable focus on the understanding of concepts as the primary causal mechanism and bracket-out considerations of the structural conditions of medical practice. I argue that the challenges in implementing person-centered care have not been from a difficulty articulating and/or understanding such goals, but from failing to address existing systemic pressures that are (...) preventing health care and health care professionals from addressing patients as persons in the fullest sense. Any examination of person-centered care and its challenges should consider the co-determining nature of the material and the conceptual/ethical. (shrink)