The systemic difficulties of health care in the USA have brought to light another issue in nurse—patient advocacy — those who require care yet have inadequate or non-existent access. Patient advocacy has focused on individual nurses who in turn advocate for individual patients, yet, while supporting individual patients is a worthy goal of patient advocacy, systemic problems cannot be adequately addressed in this way. The difficulties nurses face when advocating for patients is well documented (...) in the nursing literature and I argue that, through collective advocacy, professional nursing associations ought to extend the reach of individual nurses in order to address systemic problems in health care institutions and bureaucracies. (shrink)

The aim of this study was to increase understanding of how individual patient care and the ethical principles prescribed for nursing care are implemented in nursing documentation. The method used was a metasynthesis of the results of 14 qualitative research reports. The results indicate that individualized patient care is not visible in nurses’ documentation of care. It seems that nurses describe their tasks more frequently than patients’ experiences of their care. The results also show that the structure of (...) nursing documentation and the forms or manner of recording presupposed by the organization may prevent individual recording of patient care. In order to obtain visibility for good patient-centred and ethical nursing care, an effort should be made to influence how the content of nursing care is documented and made an essential part of individual patient care. If the content of this documentation does not give an accurate picture of care, patients’ right to receive good nursing care may not be realized. (shrink)

Medical complicity in torture is prohibited by international law and codes of professional ethics. But in the many countries in which torture is common, doctors frequently are expected to assist unethical acts that they are unable to prevent. Sometimes these doctors face a dilemma: they are asked to provide diagnoses or treatments that respond to genuine health needs but that also make further torture more likely or more effective. The duty to avoid complicity in torture then comes into conflict with (...) the doctor’s duty to care for patients. Sometimes the right thing for a doctor to do requires complicity in torture. Whether this is the case depends on: the expected consequences of the doctor’s actions; the wishes of the patient; and the extent of the doctor’s complicity with wrongdoing. Medical associations can support physicians who face this dilemma while maintaining a commitment to clear principles denouncing torture. (shrink)

In this issue, Ahmadi1 reports on the practice of hymenoplasty—a surgical intervention meant to restore a presumed physical marker of virginity prior to a woman's marriage. As Mehri and Sills2 have stated, these women ‘want to ensure that blood is spilled on their wedding night sheets.’ Although Ahmadi's research was carried out in Iran specifically, this surgery is becoming increasingly popular in a number of Western countries as well, especially among Muslim populations.3 What are the ethics of hymen restoration?Consider the (...) role of the physician. Two of the doctors interviewed by Ahmadi reported being in ‘a perpetual state of guilt because of the surgery's inherent aim at deceiving the groom’ and noted their ‘personal conflict’ at being involved in this deception. Yet: "None of the doctors believed that the surgery was unethical, arguing that the girl could be ‘abused’ and ‘can even die’ if she is discovered not … ". (shrink)

In their article, van Gils Schmidt and Salloch defend the claim that physicians have a duty to protect the climate. The logic of the argument in broad terms is that (i) there is a relationship between climate change and the burden of disease, (ii) the healthcare sector is a significant emitter of global greenhouse gasses, thereby enhancing the burden of disease and (iii) since doctors are advocates of health and stakeholders in the healthcare sector, they have a duty to respond (...) to climate change. The authors recognise the ‘ethical basis for the claim of healthcare professionals having a special responsibility in climate change is far from being obvious’. The theoretical framework they choose for making this tentative link more apparent is Korsgaard’s theory of practical identities. The main argument of the authors seems to be that practical identities are pluralistic—a person can identify as a physician and environmentalist simultaneously—and the normative positions attributable to these identities may come into conflict. More than that, they claim that being an environmentalist is increasingly becoming …. (shrink)

In an everyday private practice setting, regularly also existential topics will emerge from doctor-patient encounters. These are often questions of coping with life and lifestyle. To enable a thorough discussion of such topics, an implicit, and sometimes also explicit reference to a philosophical background is needed. Philosophical concepts to be used in this realm are discussed. An individual patient-doctor interaction is used as an example to demonstrate the doctor’s choice of hermeneutical and phenomenological philosophical concepts.

In an everyday private practice setting, regularly also existential topics will emerge from doctor-patient encounters. These are often questions of coping with life and lifestyle. To enable a thorough discussion of such topics, an implicit, and sometimes also explicit reference to a philosophical background is needed. Philosophical concepts to be used in this realm are discussed. An individual patient-doctor interaction is used as an example to demonstrate the doctor’s choice of hermeneutical and phenomenological philosophical concepts.

Although informed consent is an integral part of clinical practice, its current doctrine remains mostly a matter of law and mainstream ethics rather than empirical research. There are scarce empirical data on patients’ perceived purpose of informed consent, which may include administrative routine/courtesy gesture, simple honest permission, informed permission, patient-clinician shared decision-making, and enabling patient’s self decision-making. Different purposes require different processes.

With the increasing attention paid to patient participation in both health care policy-making and health care research, McCoy and colleagues (2020) point to a key ethical issue, namely the quest fo...

Professions have traditionally treated advocacy as a collective duty, best assigned to professional associations to perform. In North American nursing, advocacy for issues affecting identifiable patients is assigned instead to their nurses. We argue that nursing associations’ withdrawal from advocacy for patient care issues is detrimental to nurses and patients alike. Most nurses work in large institutions whose internal policies they cannot influence. When these create obstacles to good care, the inability of nurses to affect change can result (...) in avoidable distress for them and for their patients. We illustrate this point with a case study: the circumstances of the death of Michael Joseph LeBlanc, an inmate at Kingston Penitentiary Regional Hospital (Ontario). We conclude that patients and their nurses will suffer unnecessarily unless or until nursing associations cease to burden individual nurses with the responsibility for patient advocacy. (shrink)

Background: I suggest this individualized care is a fundamental principle closely linked to nursing ethics and has important benefits for the patients, however, nurses do not always take into consideration the principles of individualized care. Moreover, there is no validated instrument to assess patients’ views of individualized care in Spanish-speaking countries. Objectives: To assess the validity and reliability of the Spanish version of the Individualized Care Scale-patient. Design: A cross-sectional study design was conducted. A questionnaire survey, including the (...) Individualized Care Scale-patient, was used for data collection. Psychometric properties of reliability and validity were assessed. Fit indices of the overall model were computed. Participants and research context: Survey data were collected from a sample of 118 inpatients at a public hospital in Spain. Ethical considerations: Informed consent from participants and ethical approval was obtained from a regional Clinical Research Ethics Committee. Findings: Ordinal Cronbach’s alphas were 0.966 for Individualized Care Scale-patient subscale A and 0.969 for Individualized Care Scale-patient subscale B. The polychoric correlation between each item and the subscale ranged between 0.653–0.874 and 0.604–0.916, respectively. The exploratory factor analysis revealed a three-factor solution. Personal life situation explained relatively large amounts of the variance. Goodness of fit index showed a good fit for the model. Discussion: This study confirms three factors underlining the individualized care concept, but some differences were found in the load of the factors, such as the relevance of “personal life situation” subscale, that need further research. Conclusion: The Spanish version of the Individualized Care Scale-patient is reliable, valid, user-friendly, and suitable to be used in Spanish-speaking countries showing satisfactory properties. This instrument may help managers better understand and develop areas in which patients perceive lower individualized care received and the factors influencing it. Such key information will help ensure the right of the patient to be respected as an individual. (shrink)

Individual health assessments (IHAs) for asymptomatic individuals provide a challenge to traditional distinctions between patient care and non-medical practice. They may involve undue radiation exposure, lead to false positives, and involve high out-of-pocket costs for recipients. A recent paper (Journal of the American College of Radiology 13(12): 1447–1457.e1, 2016) has criticised the use of IHAs and argued that recipients should be classified as ‘presenters’, not ‘patients’, to distinguish it from regular medical care. I critique this classificatory move, on (...) two grounds: one, it is conceptually suspect. Two, it obviates the medical ethics framework for IHAs, potentially exposing recipients of IHAs to lower standards of oversight and protection. Responsible regulation of IHAs will be easier to ethically justify if those seeking IHAs are considered patients and not merely presenters. (shrink)

Patient choice, we might think, is the popular version of the ideas of informed consent and the principle of respect for autonomy and intimately connected to the politics of liberal individualism. There are various accounts to be given for why patient choice, in all its forms, has dominated thinking in bioethics and popular culture. All of them, I suggest, will make reference to the decline of paternalism. The bad old days of ‘doctor knows best’ are gone and were replaced by (...) the primacy of patient choice and informed consent.The response to the dominance of the principle of patient choice has been slow in building but it has come in a number of ways. Two sets of papers in this issue of the Journal of Medical Ethics show just how far this response has come and the degree to which the pendulum is swinging back in the other direction. Neil Levy's Feature article, ‘Forced to be free? Increasing patient autonomy by constraining it’, argues that we should go to greater lengths to correct patients' mistaken decisions . In the ‘Author meets critics’ section, Sarah Conly's book, Against Autonomy: Justifying Coercive Paternalism is the focus of comment . Both authors draw on a similar range of empirical evidence to undermine the sanctity of patient and individual choice. An array of commentators draw on these target pieces to give a clear picture of the ways in which the popular view can justifiably be undermined.Levy's paper focuses on the process of informed consent in clinical contexts. He argues that, while this process is crucially important, it systematically fails because of well-documented frailties of human reason. The evidence of these frailties comes from cognitive and social psychology, on biases and heuristics. The key question is how …. (shrink)

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

This paper presents a procedure designed to aid physicians and patients in the process of making medical decisions, and illustrates its implementation to aid pregnant women, who decided to undergo prenatal diagnostic test choose a physician to administer it. The procedure is based on a medical decision-making model of Karni (J Risk Uncertain 39: 1–16, 2009). This model accommodates the possibility that the decision maker’s risk attitudes may vary with her state of health and incorporates other costs, such as (...) pain and inconvenience, associated with alternative treatments. The medical decision problem was chosen for its relative simplicity and the transparency it affords. (shrink)

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

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

Background:The concept of patient advocacy is still poorly understood and not clearly conceptualized. Therefore, there is a gap between the ideal of patient advocacy and the reality of practice. In order to increase nursing actions as a patient advocate, a comprehensive and clear definition of this concept is necessary.Research objective:This study aimed to offer a comprehensive and clear definition of patient advocacy.Research design:A total of 46 articles and 2 books published between 1850 and 2016 and related to the concept of (...) patient advocacy were selected from six databases and considered for concept analysis based on Rodgers’ evolutionary approach.Ethical considerations:This study was approved by the Research Ethics Committee of Tarbiat Modares University.Findings:The attributes of patient advocacy are safeguarding (track medical errors, and protecting patients from incompetency or misconduct of co-workers and other members of healthcare team), apprising (providing information about the patient’s diagnosis, treatment, and prognosis, suggesting alternatives of healthcare, and providing information about discharge program), valuing (maintaining self-control, enabling patients to make decisions freely, maintaining individualization and humanity, maintaining patient privacy, and acting in the patients’ values, culture, beliefs, and preferences), mediating (liaison between patients, families, and healthcare professionals, being patients’ voice, and communicate patient preferences and cultural values to members of the healthcare team), and championing social justice in the provision of healthcare (confronting inappropriate policies or rules in the healthcare system, identifying and correcting inequalities in delivery of health services, and facilitating access to community health services and health resources).Discussion and conclusion:The analysis of this concept can help to develop educational or managerial theories, design instruments for evaluating the performance of nurses in patient advocacy, develop strategies for enhancing patient advocacy, and improve the safety and quality of nursing care in the community and healthcare system. (shrink)

Patient and public involvement (PPI) has gained widespread support in health research and health policy circles, but there is little consensus on the precise meaning or justifications of PPI. We argue that an important step towards clarifying the meaning and justification for PPI is to split apart the familiar acronym and draw a distinction between patient and public involvement. Specifically, we argue that patient involvement should refer to the practice of involving individuals in health research or policy on the basis (...) of their experience with a particular condition, while public involvement should refer to the practice of involving individuals in health policy or research based on their status as members of a relevant population. Analyzing cases from the UK, Australia, and the USA, we show how our proposed distinction can deliver much needed clarity to conversations on PPI, while guiding the development and evaluation of future PPI‐based policies. (shrink)

Wish to die statements are becoming a frequent phenomenon in terminally ill patients. Those confronted by these statments need to understand the complexity of such wishes, so they can respond competently and compassionately to the requests. If misunderstood, the statements can be taken at face-value and the practitioner may not recognise that a patient is in fact experiencing ambivalent feelings at the end of life, or they may misinterpret the expressed wish to die as a sign of clinical depression. (...) Public debate about the morality and ethics of various end-of-life care options has exploded in recent years. However, it has never been sensitive to the finer aspects of clinical reality or the experiences of patients. The Patient's Wish to Die: Research, Ethics, and Palliative Care brings together that reality and the patient's voice, combining them with different research approaches. It presents the best available knowledge and research methodologies about patients' wishes at the end-of-life, together with a series of ethical views and a discussion about the clinical implications for palliative care. The book presents material in an open and unbiased manner whilst remaining sensitive to the spiritual and existential dimensions of dying, and to the different cultural views that provide meaning to the individual. Written by the best specialists and ethics scholars from around the world, including palliative care practitioners and end-of-life scholars from countries where assisted dying practices are legalized and from those where it isn't, The The Patient's Wish to Die: Research, Ethics, and Palliative Care will prove essential reading for all those working or studying in the field of palliative care. (shrink)

This article examines the consequences of the politicization of health care in the United Kingdom following the creation of the National Health Service (NHS) in 1948. The NHS is founded on the principle of universal access to health care free at the point of use but in reality charges exist for some services and other services are rationed. Not to charge and/or ration would create a common-pool resource with no means of conserving scarce resources. Taking rationing decisions in the political (...) realm means that the values and priorities of individual patients are marginalized and the preferences of powerful organized groups able to capture the political process dominate. The key lesson for international health care reform is that the politicization of health care via the NHS has not led to the realization of egalitarian ends but rather has empowered vested and organized interests at the expense of individual patients. (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)

When making substituted judgments for incapacitated patients, surrogates often struggle to guess what the patient would want if they had capacity. Surrogates may also agonize over having the (sole) responsibility of making such a determination. To address such concerns, a Patient Preference Predictor (PPP) has been proposed that would use an algorithm to infer the treatment preferences of individual patients from population-level data about the known preferences of people with similar demographic characteristics. However, critics have suggested that (...) even if such a PPP were more accurate, on average, than human surrogates in identifying patient preferences, the proposed algorithm would nevertheless fail to respect the patient’s (former) autonomy since it draws on the ‘wrong’ kind of data: namely, data that are not specific to the individual patient and which therefore may not reflect their actual values, or their reasons for having the preferences they do. Taking such criticisms on board, we here propose a new approach: the Personalized Patient Preference Predictor (P4). The P4 is based on recent advances in machine learning, which allow technologies including large language models to be more cheaply and efficiently ‘fine-tuned’ on person-specific data. The P4, unlike the PPP, would be able to infer an individual patient’s preferences from material (e.g., prior treatment decisions) that is in fact specific to them. Thus, we argue, in addition to being potentially more accurate at the individual level than the previously proposed PPP, the predictions of a P4 would also more directly reflect each patient’s own reasons and values. In this article, we review recent discoveries in artificial intelligence research that suggest a P4 is technically feasible, and argue that, if it is developed and appropriately deployed, it should assuage some of the main autonomy-based concerns of critics of the original PPP. We then consider various objections to our proposal and offer some tentative replies. (shrink)

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

Background: Both anxiety and depression in family caregivers of advanced cancer patients are common, and they have a negative influence on both the FCs and the patients. Some studies suggested that a variety of interventions could alleviate the psychological symptoms of FCs. However, there is no consensus on much more effective methods for intervention, and relatively high-quality research is blank in psychological problems of these population in China. The validity of mindfulness-based stress reduction and psychological consultation guided by (...) the needs assessment tool in the psychological status of caregivers will be compared in this study to select a more suitable intervention for the FCs of advanced cancer patients in China.Methods and Analysis: A randomized N-of-1 trial would be conducted at the Cancer Hospital, Chinese Academy of Medical Sciences. Fifty eligible FCs of advanced cancer patients will be recruited, and all will receive three cycles of psychological intervention treatment, with each cycle including both of MBSR and psychological consultation guided by the NST. MBSR and psychological consultation guided by the NST will be compared with each other in each cycle, and the intervention sequence will be based on the random number table generated after the informed consent has been completed. Each treatment period is 2 weeks, and the interval between different treatment cycles or treatment periods is 1 week. The self-reported scales are measured at the beginning and end of each treatment period, including the Self-Rating Anxiety Scale, the Self-Rating Depression Scale, Distress Thermometer, Zarit Burden Interview, Chinese version of the Medical Outcomes Study 12-item Short Form, and Family Carer Satisfaction with Palliative Care scale.Dissemination: The protocol of the study was approved by the Institutional Review Board of the Ethical Committee of the Cancer Hospital, Chinese Academic of Medical Science. The results will be published in a peer-reviewed medical journal. The study is registered at Chinese Clinical Trials Registry with the trial registration number chiCTR2000033707. This study employs an innovative methodological approach on the effectiveness of MBSR and psychological consultation guided by the NST for psychological status of FCs of advanced cancer patients. The findings of the study will be helpful to provide high-quality evidence-based medical data for psychological intervention of FCs of advanced cancer patients, and guide clinicians on best quality treatment recommendations. (shrink)

This article focuses on patients' participation in decision‐making in meetings with healthcare professionals in a healthcare system, based on neoliberal regulations and ideas. Drawing on two constructed empirical cases, primarily from the perspective of patients, this article analyses and discusses the clinical practice around decision‐making meetings within a Foucauldian perspective. Patients' participation in decision‐making can be seen as an offshoot of respect for patient autonomy. A treatment must be chosen, when patients consult physicians. From the perspective (...) of patients, there is a tendency for healthcare professionals to supply the patients with the information that they think are necessary for them to make their own decision. But patients do not always want to be a ‘customer’ in the healthcare system; they want to be a patient, consulting an expert for help and advice, which creates resistance to some parts of the decision‐making process. Both professionals and patients are subject to the structural frame of the medical field, formed of both neoliberal framework and medical logic. The decision‐making competence in relation to the choice of treatment is placed away from the professionals and seen as belonging to the patient. A ‘projectification’ of the patient occurs, whereby the patient becomes responsible for his/her choices in treatment and care and the professionals support him/her with knowledge, preferences, and alternative views, out of which he/she must make his/her own choices, and the responsibility for those choices now and in the future. At the same time, there is a tendency towards de‐professionalization. In that light, participation of patients in decision‐making can be regarded as a tacit governmentality strategy that shapes the location of responsibility between individual and society, and independent patients and healthcare professionals, despite the basically desirable, appropriate, and necessary idea of involving patients in their own situations from a humanistic perspective. (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)

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)

A number of bioethicists have been critical of the power of the family to “veto” a patient’s decision to posthumously donate her organs within opt-in systems of organ procurement. One major objection directed at the family veto is that when families veto the decision of their deceased family member, they do something wrong by violating or failing to respect the autonomy of that deceased family member. The goal of this paper is to make progress on answering this objection. I do (...) this in two stages. First, I argue that the most plausible interpretation of what happens when a person registers as an organ donor in an opt-in system is that she gives her consent to the state to posthumously remove her organs for transplantation purposes. Call this the Authorization Account. Second, given the Authorization Account, I argue by analogy that when families veto an individual’s decision to donate and the individual’s organs are not in the end removed, neither the doctors nor the family violate the individual’s autonomy in any morally objectionable sense. Call this the Nonremoval Thesis. I argue that since the Nonremoval Thesis is true, we do not violate or fail to respect the autonomy of registered donors when we fail to remove their organs because their family has objected. (shrink)

The importance of patients taking an active role in their healthcare is recognized internationally, to improve safety and effectiveness in practice. There is still, however, some ambiguity about the conceptualization of that patient role; it is referred to interchangeably in the literature as engagement, involvement, and participation. The aim of this discussion paper is to examine and conceptualize the concepts of patient engagement, involvement, and participation within healthcare, particularly nursing. The concepts were found to have semantic differences and similarities, (...) although, from a nursing perspective, they can be summoned to illustrate the establishment of a mutual partnership between a patient and a nurse. The individualization of such processes requires the joint effort of engagement, involvement, or participation, represented by interactive actions of both the patient (asking questions, telling/speaking up, knowledge acquisition, learning, and decision‐making) and the nurse (recognizing, responding, information sharing, teaching, and collaborating). Suggesting that the concepts can be used interchangeably comes with some caution, requiring that nurses embrace patients playing a role in their health and healthcare. Further research and practice development should focus on how patients and nurses receive and respond to each other to establish patient engagement, involvement, and participation. (shrink)

In the medical-technological practice of in vitro fertilization, it is increasingly the couple, rather than an individual patient, that is considered the unit of treatment. This article traces some mechanisms involved in the construction of medical interventions on female bodies as appropriate and effective therapeutic solutions to problems and diagnoses pertaining to male bodies. It traces the transformation of male infertility through shifts in localization and definition of the problem, concomitant reconceptualizations of the techniques involved, redistributions of properties, and (...) specific ways of constructing "success. " It is argued that both the notion of the couple as the patient in cases of male infertility and the claim that IVF techniques are appropriate solutions to this couple's problem simultaneously presuppose and legitimize medical interventions on women's bodies. This double movement is produced by leaving exactly the required material work of physical interventions—and, consequently, the uneven distribution of costs between the sexes—out of scientific accounts of these practices. (shrink)

In the first wave of the COVID-19 pandemic, healthcare workers in some countries were forced to make distressing triaging decisions about which individual patients should receive potentially life-saving treatment. Much of the ethical discussion prompted by the pandemic has concerned which moral principles should ground our response to these individual triage questions. In this paper we aim to broaden the scope of this discussion by considering the ethics of broader structural allocation decisions raised by the COVID-19 pandemic. (...) More specifically, we consider how nations ought to distribute a scarce life-saving resource across healthcare regions in a public health emergency, particularly in view of regional differences in projected need and existing capacity. We call this the regional triage question. Using the case study of ventilators in the COVID-19 pandemic, we show how the moral frameworks that we might adopt in response to individual triage decisions do not translate straightforwardly to this regional-level triage question. Having outlined what we take to be a plausible egalitarian approach to the regional triage question, we go on to propose a novel way of operationalising the ‘save the most lives’ principle in this context. We claim that the latter principle ought to take some precedence in the regional triage question, but also note important limitations to the extent of the influence that it should have in regional allocation decisions. (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)