The principle of patient autonomy dominates the contemporary debate over medical ethics. In this examination of the doctor-patient relationship, physician and philosopher Alfred Tauber argues that the idea of patient autonomy -- which was inspired by other rights-based movements of the 1960s -- was an extrapolation from political and social philosophy that fails to ground medicine's moral philosophy. He proposes instead a reconfiguration of personal autonomy and a renewed commitment to an ethics of care. In this formulation, (...) physician beneficence and responsibility become powerful means for supporting the autonomy and dignity of patients. Beneficence, Tauber argues, should not be confused with the medical paternalism that fueled the patient rights movement. Rather, beneficence and responsibility are moral principles that not only are compatible with patient autonomy but strengthen it. Coordinating the rights of patients with the responsibilities of their caregivers will result in a more humane and robust medicine.Tauber examines the historical and philosophical competition between facts and values in medicine. He analyzes the shifting conceptions of personhood underlying the doctor-patient relationship, offers a "topology" of autonomy, from Locke and Kant to Hume and Mill, and explores both philosophical and practical strategies for reconfiguring trust and autonomy. Framing the practicalities of the clinical encounter with moral reflections, Tauber calls for an ethical medicine in which facts and values are integrated and humane values are deliberately included in the program of care. (shrink)

The Patient in the Family diagnoses the ways in which the worlds of home and hospital misunderstand each other. The authors explore how medicine, through its new reproductive technologies, is altering the stucture of families, how families can participate more fully in medical decision-making, and how to understand the impact on families of medical advances to extend life but not vitality.

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

It is common to distinguish moral rules, reasons, or values that are agent-relative from those that are agent-neutral. One can also distinguish moral rules, reasons, or values that are moment-relative from those that are moment-neutral. In this article, I introduce a third distinction that stands alongside these two distinctions—the distinction between moral rules, reasons, or values that are patient-relative and those that are patient-neutral. I then show how patient-relativity plays an important role in several moral theories, gives (...) us a better understanding of agent-relativity and moment-relativity, and provides a novel objection to Derek Parfit’s “appeal to full relativity” argument. (shrink)

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

Ethically challenging situations routinely arise in the course of illness and healthcare. However, very few studies have surveyed patients and family members about their experiences with ethically challenging situations. To address this gap in the literature, we surveyed patients and family members at three hospitals. We conducted a content analysis of their responses to open-ended questions about their most memorable experience with an ethical concern for them or their family member. Participants described 219 unique ethical experiences that spanned many of (...) the prevailing themes of bioethics, including the patient-physician relationship, end-of-life care, decision-making capacity, healthcare costs, and genetic testing. Participants focused on relational issues in the course of experiencing illness and receiving medical care and concerns regarding the patient-physician encounters. Many concerns arose outside of a healthcare setting. These data indicate areas for improvement for healthcare providers but some concerns may be better addressed outside of the traditional healthcare setting. (shrink)

A Christian ethicist discusses such problems as organ transplants, caring for the terminally ill, and defining death.

Patient preference predictors (PPPs) promise to provide medical professionals with a new solution to the problem of making treatment decisions on behalf of incapacitated patients. I show that the use of PPPs faces a version of a normative problem familiar from legal scholarship: the problem of naked statistical evidence. I sketch two sorts of possible reply, vindicating and debunking, and suggest that our reply to the problem in the one domain ought to mirror our reply in the other. The (...) conclusion is thus conditional: if we think the problem of naked statistical evidence is a serious problem in the legal domain, then we should be concerned about the symmetrical problem for PPPs. (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)

The puzzling case of the broken arm -- Hernias, diets, and drugs -- Why physicians cannot know what will benefit patients -- Sacrificing patient benefit to protect patient rights -- Societal interests and duties to others -- The new, limited, twenty-first-century role for physicians as patient assistants -- Abandoning modern medical concepts: doctor's "orders" and hospital "discharge" -- Medicine can't "indicate": so why do we talk that way? --"Treatments of choice" and "medical necessity": who is fooling whom? (...) -- Abandoning informed consent -- Why physicians get it wrong and the alternatives to consent: patient choice and deep value pairing -- The end of prescribing: why prescription writing is irrational -- The alternatives to prescribing -- Are fat people overweight? -- Beyond prettiness: death, disease, and being fat -- Universal but varied health insurance: only separate is equal -- Health insurance: the case for multiple lists -- Why hospice care should not be a part of ideal health care I: the history of the hospice -- Why hospice care should not be a part of ideal health care II: hospice in a postmodern era -- Randomized human experimentation: the modern dilemma -- Randomized human experimentation: a proposal for the new medicine -- Clinical practice guidelines and why they are wrong -- Outcomes research and how values sneak into finding of fact -- The consensus of medical experts and why it is wrong so often. (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)

Patient and citizen participation is now regarded as central to the promotion of sustainable health and health care. Involvement efforts create and encounter many diverse ethical challenges that have the potential to enhance or undermine their success. This article examines different expressions of patient and citizen participation and the support health ethics offers. It is contended that despite its prominence and the link between patient empowerment and autonomy, traditional bioethics is insufficient to guide participation efforts. In addition, (...) the turn to a “social paradigm” of ethics in examinations of biotechnologies and public health does not provide an account of values that is commensurable with the pervasive autonomy paradigm. This exacerbates rather than eases tensions for patients and citizens endeavoring to engage with health. Citizen and patient participation must have a significant influence on the way we do health ethics if its potential is to be fulfilled. (shrink)

Various kinds of user and patient involvement are spreading in healthcare in most Western countries. The purpose of this study is to critically assess the actual conditions for patients’ involvement in healthcare practice in Greenland and to point to possibilities for development. Patients’ perspectives on their own conduct of everyday life with illness and their possibilities for participation when hospitalized are examined in relation to the conditions in a hospital setting dominated by biomedical practice. On a theoretical level, it (...) is argued that the concept of ‘participation’ is preferable to the concept ‘involvement’ in healthcare. The study shows that there are several interconnected areas for development: the structural frames of hospital practice, including professionals’ possibilities for handling patient participation, and the agency of the patients conducting their everyday lives when hospitalized. Consequences of the biomedical hegemony are discussed in relation to WHO ́s broader approach to disease, illness and health and the still existing postcolonial traces of power and hierarchy. Finally it is argued that patient participation during hospitalization will promote the patients ́ conduct of everyday life, the cultural knowledge of the professionals, and the democratization of the healthcare sector. Such changes might be connected to a more encompassing democratic societal development – in Greenland as well as globally. (shrink)

Patient advocacy organizations (PAOs) advocate for increased research funding and policy changes and provide services to patients and their families. Given their credibility and political clout, PAOs are often successful in changing policies, increasing research funding, and increasing public awareness of medical conditions and the problems of their constituents. In order to advance their missions, PAOs accept funding, frequently from pharmaceutical firms. Industry funding can help PAOs advance their goals but can also create conflicts of interest (COI). Research indicates (...) that bias may occur, even among well-meaning professionals, when people and organizations have financial COI. Industry funding may therefore influence PAOs to act in ways that favor the interests of their donors, which may increase the risk of harm to patients. This article extends the analysis developed in the Institute of Medicine report, Conflicts of Interest in Medical Research, Education, and Practice, and applies the analysis to understand PAOs and their relationships with industry. It argues that the preferred goal of institutional COI policies should not be to promote trust, but to promote trustworthiness and appropriately placed trust. (shrink)

Patient advocacy organizations provide patient- and caregiver-oriented education, advocacy, and support services. PAOs are formally organized nonprofit groups that concern themselves with medical conditions or potential medical conditions and have a mission and take actions that seek to help people affected by those medical conditions or to help their families. Examples of PAOs include the American Cancer Society, the National Alliance on Mental Illness, and the American Heart Association. These organizations advocate for, and provide services to, millions of (...) people with physical and mental conditions — such as cancer, mental illness, diabetes, and cardiovascular disease — via their outreach, meetings, counseling, websites, and published materials. A PAO usually seeks to raise public awareness of a disease’s symptoms, risk factors, and treatment options and promotes research to cure or to prevent that disease. (shrink)

In this companion volume to their 1981 work, A Philosophical Basis of Medical Practice, Pellegrino and Thomasma examine the principle of beneficence and its role in the practice of medicine. Their analysis, which is grounded in a thorough-going philosophy of medicine, addresses a wide array of practical and ethical concerns that are a part of health care decision-making today. Among these issues are the withdrawing and withholding of nutrition and hydration, competency assessment, the requirements for valid surrogate decision-making, quality-of-life determinations, (...) the allocation of scarce health care resources, medical gatekeeping, and for-profit medicine. The authors argue for the restoration of beneficence to its place as the fundamental principle of medical ethics. They maintain that to be guided by beneficence a physician must perform a right and good healing action which is consonant with the individual patient 's values. In order to act in the patient 's best interests, or the patient 's good, the physician and patient must discern what that good is. This knowledge is gained only through a process of dialogue between patient and/or family and physician which respects and honors the patient 's autonomous self-understanding and choice in the matter of treatment options. This emphasis on a dialogical discernment of the patient 's good rejects the assumption long held in medicine that what is considered to be the medical good is necessarily the good for this patient. In viewing autonomy as a necessary condition of beneficence, the authors move beyond a trend in the medical ethics literature which identifies beneficence with paternalism. In their analysis of beneficence, the authors reject the current emphasis on rights- and duty-based ethical systems in favor of a virtue-based theory which is grounded in the physician- patient relationship. This book's provocative contributions to medical ethics will be of great interest not only to physicians and other health professionals, but also to ethicists, students, patients, families, and all others concerned with the relationship of professional to patient and patient to professional in health care today. (shrink)

Health care has become increasingly patient-centred and medical guidelines are considered to be one of the instruments that contribute towards making it so. We reviewed the literature to identify studies on this subject. Both normative and empirical studies were analysed. Many studies recommend active patient participation in the process of guideline development as the instrument to make guidelines more patient-centred. This is done on the assumption that active patient participation will enhance the quality of the guidelines. (...) We found no empirical evidence, however, to support this assumption. Moreover, the studies show that patients experience several difficulties in the participation process, which cannot solely be traced back to flawed practices. Given this poor track record we conclude that the plea to actively involve patients in the guideline development process should be reconsidered. (shrink)

Phenomenology gives rise to certain ontological considerations that have far-reaching implications for standard conceptions of patient autonomy in medical ethics, and, as a result, the obligations of and to patients in clinical decision-making contexts. One such consideration is the phenomenological reduction in classical phenomenology, a core feature of which is the characterisation of our primary experiences as immediately and inherently meaningful. This paper builds on and extends the analyses of the phenomenological reduction in the works of Husserl, Heidegger, and (...) Merleau-Ponty in order to identify and explain its implications for our current understanding of the principle of respect for patient autonomy and the norms of clinical decision making. (shrink)

Introduction International sharing of health data opens the door to the study of the so-called ‘Big Data’, which holds great promise for improving patient-centred care. Failure of recent data sharing initiatives indicates an urgent need to invest in societal trust in researchers and institutions. Key to an informed understanding of such a ‘social license’ is identifying the views patients and the public may hold with regard to data sharing for health research. Methods We performed a narrative review of the (...) empirical evidence addressing patients’ and public views and attitudes towards the use of health data for research purposes. The literature databases PubMed, Embase, Scopus and Google Scholar were searched in April 2019 to identify relevant publications. Patients’ and public attitudes were extracted from selected references and thematically categorised. Results Twenty-seven papers were included for review, including both qualitative and quantitative studies and systematic reviews. Results suggest widespread—though conditional—support among patients and the public for data sharing for health research. Despite the fact that participants recognise actual or potential benefits of data research, they expressed concerns about breaches of confidentiality and potential abuses of the data. Studies showed agreement on the following conditions: value, privacy, risk minimisation, data security, transparency, control, information, trust, responsibility and accountability. Conclusions Our results indicate that a social license for data-intensive health research cannot simply be presumed. To strengthen the social license, identified conditions ought to be operationalised in a governance framework that incorporates the diverse patient and public values, needs and interests. (shrink)

We conducted focus groups to assess patient attitudes toward research on medical practices in the context of usual care. We found that patients focus on the implications of this research for their relationship with and trust in their physicians. Patients view research on medical practices as separate from usual care, demanding dissemination of information and in most cases, individual consent. Patients expect information about this research to come through their physician, whom they rely on to identify and filter associated (...) risks. In general, patients support this research, but worry that participation in research involving randomization may undermine individualized care that acknowledges their unique medical histories. These findings suggest the need for public education on variation in practice among physicians and the need for a collaborative approach to the governance of research on medical practices that addresses core values of trust, transparency, and partnership. (shrink)

The distribution of scarce healthcare resources is an increasingly important issue due to factors such as expensive ‘high tech’ medicine, longer life expectancies and the rising prevalence of chronic illness. Furthermore, in the current healthcare context lifestyle-related factors such as high blood pressure, tobacco use and obesity are believed to contribute significantly to the global burden of disease. As such, this paper focuses on an ongoing debate in the academic literature regarding the role of responsibility for illness in healthcare resource (...) allocation: should patients with self-caused illness receive lower priority in access to healthcare resources? This paper critically describes the lower priority debate's 12 key arguments and maps out their relationships. This analysis reveals that most arguments have been refuted and that the debate has stalled and remains unresolved. In conclusion, we suggest progression could be achieved by inviting multidisciplinary input from a range of stakeholders for the development of evidence-based critical evaluations of existing arguments and the development of novel arguments, including the outstanding rebuttals. (shrink)

Background Respect for patients’ autonomy is usually considered to be an important ethical principle in Western countries; privacy is one of the implications of such respect. Healthcare professionals frequently encounter ethical dilemmas during their practice. The past few decades have seen an increased use of courts to resolve intractable ethical dilemmas across both the developed and the developing world. However, Chinese and American bioethics differ largely due to the influence of Chinese Confucianism and Western religions, respectively, and there is a (...) dearth of comparative studies that explore cases of ethical dilemmas between China and the United States. Methods This paper discusses four typical cases with significant social impact. First, it compares two cases concerning patient privacy: the “Shihezi University Hospital Case”, in which a patient was used as a clinical teaching object without her permission, and the “New York-Presbyterian Hospital Case”, in which the hospital allowed the filming of a patient’s treatment without his consent. Second, it compares two cases regarding patient autonomy and potentially life-saving medical procedures: the “Case of Ms. L”, concerning a cohabitant’s refusal to sign a consent form for a pregnant woman’s caesarean, and the “Case of Mrs. V”, concerning a hospital’s insistence upon a blood transfusion for a dissenting patient. This paper introduces the supporting and opposing views for each case and discusses their social impact. It then compares and analyses the differences between China and the United States from cultural and legislative perspectives. Conclusions Ethical dilemmas have often occurred in China due to the late development of bioethics. However, the presence of bioethics earlier in the US than in China has not spared the US of ethical dilemmas. This paper highlights lessons and inspiration from the cases for healthcare professionals and introduces readers to the role and weight of privacy and autonomy in China and in the US from the perspectives of different cultures, religions and laws. (shrink)

Maintenance and promotion of patient dignity is an ethical responsibility of healthcare workers. The aim of this study was to investigate patient dignity and related factors in patients with heart failure. In this qualitative study, 22 patients with heart failure were chosen by purposive sampling and semi-structured interviews were conducted until data saturation. Factors related to patient dignity were divided into two main categories: patient/care index and resources. Intrapersonal features (inherent characteristics and individual beliefs) and interpersonal (...) interactions (communication, respect, enough information, privacy, and authority) were classified as components of the patient/care index category. Human resources (management and staff) and environmental resources (facilities and physical space) were classified as components of the resources category. The results will increase healthcare staff's understanding of patient dignity and its related factors, and provide information regarding the development of systems and processes that support patients in ways that are consistent with these values. (shrink)

The question of whether clinical ethics consultants may engage in patient advocacy in the course of consultation has not been addressed, but it highlights for the field that consultants? allegiances, and the boundaries of appropriate professional practice, must be better understood. I consider arguments for and against patient advocacy in clinical ethics consultation, which demonstrate that patient advocacy is permissible, but not central to the practice of consultation. I then offer four recommendations for consultants who engage in (...) patient advocacy, and consider the implications of this issue for the field.1. (shrink)

South Africa currently has a pluralistic health care system with separate public and private sectors. It is, however, moving towards a socialised model with the introduction of National Health Insurance. The South African legislative environment has changed recently with the promulgation of the Consumer Protection Act and proposed amendments to the National Health Act. Patients can now be viewed as consumers from a legal perspective. This has various implications for health care systems, health care providers and the doctor-patient relationship.

The clinical application of the concept of patient autonomy has centered on the ability to deliberate and make treatment decisions (decisional autonomy) to the virtual exclusion of the capacity to execute the treatment plan (executive autonomy). However, the one-component concept of autonomy is problematic in the context of multiple chronic conditions. Adherence to complex treatments commonly breaks down when patients have functional, educational, and cognitive barriers that impair their capacity to plan, sequence, and carry out tasks associated with chronic (...) care. The purpose of this article is to call for a two-component re-conceptualization of autonomy and to argue that the clinical assessment of capacity for patients with chronic conditions should be expanded to include both autonomous decision-making and autonomous execution of the agreed-upon treatment plan. We explain how the concept of autonomy should be expanded to include both decisional and executive autonomy, describe the biopsychosocial correlates of the two-component concept of autonomy, and recommend diagnostic and treatment strategies to support patients with deficits in executive autonomy. (shrink)

In an analysis of recent work on nudging we distinguish three positions on the relationship between nudging founded in libertarian paternalism and the protection of personal autonomy through informed consent. We argue that all three positions fail to provide adequate protection of personal autonomy in the clinical context. Acknowledging that nudging may be beneficial, we suggest a fourth position according to which nudging and informed consent are valuable in different domains of interaction.

The Patient in the Family diagnoses the ways in which the worlds of home and hospital misunderstand each other. The authors explore how medicine, through its new reproductive technologies, is altering the structure of families, how families can participate more fully in medical decision-making, and how to understand the impact on families when medical advances extend life but not vitality.

The patient admission scheduling problem is an optimization problem in which we assign patients automatically to beds for a specific period of time while preserving their medical requirements and their preferences. In this paper, we present a novel solution to the PAS problem using the harmony search algorithm. We tailor the HS to solve the PAS problem by distributing patients to beds randomly in the harmony memory while respecting all hard constraints. The proposed algorithm uses five neighborhood strategies in (...) the pitch adjustment stage. This technique helps in increasing the variations of the generated solutions by exploring more solutions in the search space. The PAS standard benchmark datasets are used in the evaluation. Initially, a sensitivity analysis of the HS algorithm is studied to show the effect of its control parameters on the HS performance. The proposed method is also compared with nine methods: non-linear great deluge, simulated annealing with hyper-heuristic, improved with equal hyper-heuristic, simulated annealing, tabu search, simple random simulated annealing with dynamic heuristic, simple random improvement with dynamic heuristic, simple random great deluge with dynamic heuristic, and biogeography-based optimization. The proposed HS algorithm is able to produce comparably competitive results when compared with these methods. This proves that the proposed HS is a very efficient alternative to the PAS problem, which can be efficiently used to solve many scheduling problems of a large-scale data. (shrink)

Respecting privacy and patients’ satisfaction are amongst the main indicators of quality of care and one of the basic goals of health services. This study, carried out in 2007, aimed to investigate the extent to which patient privacy is observed and its correlation with patient satisfaction in three emergency departments of Tehran University of Medical Science, Iran. Questionnaire data were collected from a convenience sample of 360 patients admitted to emergency departments and analysed using SPSS software. The results (...) indicated that, according to 50.6% of the patients, the extent to which their privacy was respected was described as either ‘weak’ or ‘average’. Spearman’s coefficient indicated a significant correlation between respecting privacy and the patients’ satisfaction about the various aspects of privacy studied. Considering the levels of privacy observed together with the patients’ degree of satisfaction, it is imperative that clinical professionals address both aspects from conceptual and practical viewpoints. (shrink)

In order to protect patients against medical paternalism, patients have been granted the right to respect of their autonomy. This right is operationalized first and foremost through the phenomenon of informed consent. If the patient withholds consent, medical treatment, including life-saving treatment, may not be provided. However, there is one proviso: The patient must be competent to realize his autonomy and reach a decision about his own care that reflects that autonomy. Since one of the most important (...) class='Hi'>patient rights hinges on the patient's competence, it is crucially important that patient decision making incompetence is clearly defined and can be diagnosed with the greatest possible degree of sensitivity and, even more important, specificity. Unfortunately, the reality is quite different. There is little consensus in the scientific literature and even less among clinicians and in the law as to what competence exactly means, let alone how it can be diagnosed reliably. And yet, patients are deemed incompetent on a daily basis, losing the right to respect of their autonomy. In this article, we set out to fill that hiatus by beginning at the very beginning, the literal meaning of the term competence. We suggest a generic definition of competence and derive four necessary conditions of competence. We then transpose this definition to the health care context and discuss patient decision making competence. (shrink)

Patient participation in healthcare is highly promoted for democratic reasons. Older patients make up a large part of the hospital population but their voices are less easily heard by most patient participation instruments. The client council can be seen as an important medium to represent the interests of this increasing group of patients. Every Dutch healthcare institution is obliged to have a client council and its rights are legally established. This paper reports on a case study of a (...) client council in a hospital and shows how equality as the core democratic value manifests itself in practice and marginalizes the voices of older patients. Based on the work of Joan Tronto we show that sameness is the driving force behind the functioning of the client council which leads the council to operate as part of the hospital system. Consequently, important aspects of the hospital practice remain out of sight. To be of greater value for all patients we argue that successful patient participation requires not only equal opportunities but also ‘the condition of equal voice’. (shrink)

Background Informed consent is an integral component of good medical practice. Many researchers have investigated measures to improve the quality of informed consent, but it is not clear which techniques work best and why. To address this problem, we propose developing a core outcome set to evaluate interventions designed to improve the consent process for surgery in adult patients with capacity. Part of this process involves reviewing existing research that has reported what is important to patients and doctors in the (...) informed consent process. Methods This qualitative synthesis comprises four phases: identification of published papers and determining their relevance; appraisal of the quality of the papers; identification and summary of the key findings from each paper while determining the definitiveness of each finding against the primary data; comparison of key themes between papers such that findings are linked across studies. Results Searches of bibliographic databases returned 11,073 titles. Of these, 16 studies met the inclusion criteria. Studies were published between 1996 and 2016 and included a total of 367 patients and 74 health care providers. Thirteen studies collected data using in-depth interviews and constant comparison was the most common means of qualitative analysis. A total of 94 findings were extracted from the primary papers and divided into 17 categories and ultimately 6 synthesised findings related to: patient characteristics, knowledge, communication, the model patient, trust and decision making. Conclusions This qualitative meta-aggregation is the first to examine the issue of informed consent for surgery. It has revealed several outcomes deemed important to capture by patients and clinicians when evaluating the quality of a consent process. Some of these outcomes have not been examined previously in research comparing methods for informed consent. This review is an important step in the development of a COS to evaluate interventions designed to improve the consent process for surgery. Registration The study protocol was registered on the international prospective register for systematic reviews. (shrink)

The purpose of this study was to explore the challenges met by nursing staff in a rehabilitation ward. The overall design was qualitative: data were derived from focus interviews with groups of nurses and analyzed from a phenomenological-hermeneutic perspective. The main finding was that challenges emerge on two levels of ethics and rationality: an economic/administrative level and a level of care. An increase in work-load and the changing potential for patient rehabilitation influence the care that nurses can provide in (...) rehabilitating patients, and therefore also affect patients’ feelings of self-worth and dignity. Some patients wish to maintain their independence and autonomy, whereas others seem to ‘lose themselves’. Independence and autonomy are associated with dignity, but their lack is contrary to it. (shrink)

The legal doctrine of informed consent has overwhelmingly failed to assure that the medical treatment patients get is the treatment patients want. This Article describes and defends an ongoing shift toward shared decision making processes incorporating the use of certified patient decision aids.

The coronavirus disease 2019 pandemic has strongly affected oncology patients. Many screening and treatment programs have been postponed or canceled, and such patients also experience fear of increased risk of exposure to the virus. In many cases, locus of control, coping flexibility, and perception of a supportive environment, specifically family resilience, can allow for positive emotional outcomes for individuals managing complex health conditions like cancer. This study aims to determine if family resilience, coping flexibility, and locus of control can mitigate (...) the negative affect caused by the pandemic and enhance positive affect in breast cancer patients. One hundred and fifty-four female patients with breast cancer completed the Walsh’s Family Resilience Questionnaire, the Perceived Ability to Cope With Trauma Scale, the Positive-Negative Affect Schedule, and the Mini Locus of Control Scale. Family resilience and internality of locus of control contribute significantly to positive affective responses. Family resilience is responsible for mitigating the negative affect perceived during the pandemic and is enhanced by external locus of control. Evidence suggests that clinical psychologists should develop and propose programs to support oncology patients’ family resilience, coping flexibility, and internal locus of control, allowing for decreased stress and improved adaptability for effectively managing cancer treatment during the pandemic. (shrink)

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

To date, few Norwegian clinical ethics committees (CECs) have included patients or next of kin in case discussions. In 2008, Rikshospitalet's (The National Hospital's) CEC began to routinely invite patients and relatives into case discussions. In this paper, we describe seven cases discussed by this committee in 2008. Six involved life and death decision-making in collaboration with the next of kin, while one related case did not include relatives. In our opinion, representing the patient's perspective was advantageous to the (...) discussion itself, to the conclusion made and to the next of kin's acceptance of the resolution. We believe that if the patient had been represented in the last case, the outcome might have been different. We conclude that successful patient involvement will rely on well-structured case discussions, an open atmosphere and good preparation and follow-up. (shrink)

This paper aims to critique the phenomenon of advanced patient autonomy and choice in healthcare within the specific context of self-testing devices. A growing number of self-testing medical devices are currently available for home use. The premise underpinning many of these devices is that they assist individuals to be more autonomous in the assessment and management of their health. Increased patient autonomy is assumed to be a good thing. We take issue with this assumption and argue that self-testing (...) provides a specific example how increased patient autonomy and choice within healthcare might not best serve the patient population. We propose that current interpretations of autonomy in healthcare are based on negative accounts of liberty to the detriment of a more relational understanding. We also propose that Kantian philosophy is often applied to the healthcare arena in an inappropriate manner. We draw on the philosophical literature and examples from the self-testing process to support these claims. We conclude by offering an alternative account of autonomy based on the interrelated concepts of relationality, care and responsibility. (shrink)

In patient-centred care, shared decision-making is advocated as the preferred form of medical decision-making. Shared decision-making is supported with reference to patient autonomy without abandoning the patient or giving up the possibility of influencing how the patient is benefited. It is, however, not transparent how shared decision-making is related to autonomy and, in effect, what support autonomy can give shared decision-making. In the article, different forms of shared decision-making are analysed in relation to five different aspects (...) of autonomy: (1) self-realisation; (2) preference satisfaction; (3) self-direction; (4) binary autonomy of the person; (5) gradual autonomy of the person. It is argued that both individually and jointly these aspects will support the models called shared rational deliberative patient choice and joint decision as the preferred versions from an autonomy perspective. Acknowledging that both of these models may fail, the professionally driven best interest compromise model is held out as a satisfactory second-best choice. (shrink)

Today, monitoring of patient complaints in healthcare services is being used as a tool for quality assurance systems and in the future development of services. This nationwide register study describes the number of all complaints processed, number of complaints between different state provinces, healthcare services and healthcare professionals, and outcomes of complaints in Finland during the period 2000–2004. All complaints processed at the State Provincial Offices and the National Authority for Medicolegal Affairs were analysed by statistical methods. Complaints about (...) mental healthcare were explored in greater detail. The analysis showed that the number of patient complaints increased considerably during the study period. There were changes in the number of complaints between study years in different provinces. Out of different healthcare services, an especially marked increase was seen in private healthcare. Nearly all complaints were lodged against physicians, and over half of the complaints were made because of medical error. In mental health care, patients more often complained about unsatisfactory certificates and statements and the use of compulsory hospital care. An analysis of the outcomes revealed that in mental health care complaints more seldom led to consequences. The results need to be utilised when planning interventions for advanced supervision, prevention of adverse events and patient safety in healthcare, and especially in mental health care. From the patients’ perspective, it is important to create a culture where most problem situations are handled where the treatment was provided, thus avoiding a complex complaints process. (shrink)

Science and technology studies concerned with the study of lay influence on the sciences usually analyze either the political or the normative epistemological consequences of lay interference. Here I frame the relation between patients, knowledge, and the sciences by opening up the question: How can we articulate the knowledge that patients develop and use in their daily lives and make it transferable and useful to others, or, `turn it into science’? Elsewhere, patient knowledge is analyzed either as essentially different (...) from or similar to medical knowledge. The category of experiential knowledge is vague and is used to encompass many types of experience, whereas the knowledge of the `expert patient’ may be assumed to have the shape of up-to-date medical information. This paper shows through a case study of people with severe lung disease that patient knowledge can be understood as a form of practical knowledge that patients use to translate medical and technical knowledge into something useful to their daily life with disease. Patients coordinate this with homegrown know-how and advice from fellow patients, weighing different values - of which `taking good care of one’s body’ is but one - that may conflict in a specific situation. These practices result in sets of techniques that may be made useful to others. The paper argues for two alternatives to state-of-the-art medical research to turn patient knowledge into science: ethnographies of knowledge practices and the collection and making accessible of techniques. (shrink)

Jessica Flanigan defends patients' rights of self-medication on the grounds that same moral reasons against medical paternalism in clinical contexts are also reasons against paternalistic pharmaceutical policies, including prohibitive approval processes and prescription requirements.

Patient-funded trials are gaining traction as a means of accelerating clinical translation. However, such trials sidestep mechanisms that promote rigor, relevance, efficiency, and fairness. We recommend that funding bodies or research institutions establish mechanisms for merit review of patient-funded trials, and we offer some basic criteria for evaluating PFT protocols.

Next SectionPurpose The importance of recognising patient dignity has been realised in recent years. Despite being a central phenomenon in medicine, dignity is a controversial concept, the definition of which in healthcare centres is influenced by a multitude of factors. The aim of this study was to explore the perspective of Iranian patients on respect for their dignity in healthcare centres. Methods With the use of purposeful sampling, 20 patients were interviewed over an 11-month period in three educational hospitals (...) affiliated with the government. They were questioned about experiences related to respect for their dignity during their hospital encounter. Data were processed by qualitative content analysis. Results Data analysis identified nine categories and four themes. Respondents expressed their expectations and attitudes about dignity by the following themes: seeking a haven; disrespecting privacy; communicating in a vacuum; and disregard for secondary caregivers. They described how respect for their privacy, effective communication, access to facilities, and a regard for the requirements of their companions made them feel that their dignity had been conserved. Conclusions The findings indicate that almost no patient is satisfied with the quality of services with respect to maintenance of their dignity. Regardless of their hospital location and state of health, most participants had common complaints. These findings agree with the literature and confirm that grounds should be provided for conserving dignity in the healthcare system. To reach this goal, healthcare professionals should be aware of the factors that violate or preserve dignity from the patient's perspective. (shrink)