In lieu of an abstract, here is a brief excerpt of the content:Lisa’s StoryLisa P. (wife of patient) and Jeanne KerwinMy husband suffered from sudden onset of heart failure with a very low ejection fraction and was on IV Milrinone at the age of 47. One of the most powerful things he told me was that he was not afraid to die and therefore did not want to move forward with Milrinone. He eventually “did it for the kids.” After (...) the Milrinone drip was no longer working, he was offered an LVAD (left ventricular assist device) to keep him alive. He refused, but the doctor again convinced him to “do it for your kids” and said, “we put these devices in 80-year-olds.” He did not have time to explore any other options and reluctantly accepted the LVAD. It was implanted in May of 2014 in a very long and complicated surgery with a long and difficult recovery. He was in the hospital for a long time, and then he refused to go to rehab upon discharge, making it difficult for our family to manage, as he was extremely weak and needed care of his wound dressing. He worried about the financial [End Page 7] impact of a heart transplant and the medications required, as we were already struggling with the medical bills. He refused to have more surgery with the potential complications and never agreed to get on the transplant waiting list.After the implanted LVAD, my husband was not able to do most of what he loved in life. He couldn’t work (he was a truck driver), he couldn’t go fishing or swimming in the ocean, he couldn’t go hunting and fishing, and his overall physical condition was so poor that he couldn’t cook, garden and, most aggravating to him, he could not take a regular hot shower. The LVAD had to be covered with plastic in order to avoid getting the drive-line area wet, so bathing was a complicated process. He had trouble with stairs, had neuropathic pain in his legs from diabetes, and because of the pain medications, he felt cloudy and dizzy and slept most of the day in his recliner. I took care of him, even after I had to go back to work, and at the same time, I managed our two children (ages 9 and 12 at the time of LVAD).After almost two years of living with the LVAD, multiple hospitalizations for GI bleeds then seizures, more medications, and weekly blood draws for INR1, my husband requested that the LVAD be de-activated and that he be allowed to die of his heart failure. He described his life as “miserable.” He watched as his misery impacted his children and me. He suffered daily and had none of the joys that made life worth living for him. When we approached the cardiac team that implanted and monitored his LVAD with his request, they said “no.” They would not de-activate the LVAD because it was working. It was keeping him alive and he had no other terminal illness. His palliative doctor, who was treating his pain, also heard his request and told us to call for an “ethics consult” to determine if he would be “allowed” to have the LVAD de-activated. We got the number and called on March 31, 2016.At the time of the call to Ethics, we had no idea what “Ethics” was, other than a general definition of the word ethics as in professional behaviors and such. We did not know what to expect but we called. We would never have known to call “Ethics” if the palliative doctor had not advised us to do so, and my husband might have suffered a longer, more painful life both mentally and physically prolonged by the LVAD.We explained the request to the ethics consultant. She listened to my husband describe his daily living and his dissatisfaction with the quality of his life, his physical and emotional suffering, and his wish to rid himself of the LVAD and allow nature to take its course. There was actually no decision to be made on his part. He had already made up... (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)

Between 15 and 60% of patients are considered ?difficult? by their treating physicians. Patient psychiatric pathology is the conventional explanation for why patients are deemed ?difficult.? But the prevalence of the problem suggests the possibility of a less pathological cause. I argue that the phenomenon can be better explained as a response to problematic interactions related to health care delivery. If there are grounds to reconceive the ?difficult? patient as reacting to the perception of ill treatment, then there (...) is an ethical obligation to address this perception of harm. Resolution of such conflicts currently lies with the provider and patient. But the ethical stakes place these conflicts into the province of the ethics consult service. As the resource for addressing ethical dilemmas, there is a moral mandate to offer assistance in the resolution of these ethically charged conflicts that is no less pressing than the more familiar terrain of clinical ethics consultation. (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)

The aim of this study is to explore how nurses perceive patient participations of patients over 75 years old undergoing hemodialysis treatment in dialysis units, and of their next of kin. Ten nurses told stories about what happened in the dialysis units. These stories were analyzed with critical discourse analysis. Three discursive practices are found: (1) the nurses’ power and control; (2) sharing power with the patient; and (3) transferring power to the next of kin. The first and (...) the predominant discursive practice can be explained with an ideology of paternalism, in which the nurses used biomedical explanations and the ethical principle of benefice to justify their actions. The second can be explained with an ideology of participation, in which the nurses used ethical narratives as a way to let the patients participate in the treatment. The third seemed to involve autonomous decision-making and the ethical principle of autonomy for the next of kin in the difficult end-of-life decisions. (shrink)

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

Green bioethics is an area of research and scholarship that examines the impact of healthcare practices and policies on the environment and emphasises environmental values, such as ecological sustainability and stewardship. Some green bioethicists have argued that healthcare providers should inform patients about the environmental impacts of treatments and advocate for options that minimise adverse impacts. While disclosure of information pertaining to the environmental impacts of treatments could facilitate autonomous decision-making and strengthen the patient–provider relationship in situations where patients (...) have clearly expressed environmental concerns, it may have the opposite effect in other situations if makes patients feel like they are being judged or manipulated. We argue, therefore, that there is not a generalisable duty to disclose environmental impact information to all patients during the consent process. Providers who practice green bioethics should focus on advocating for system-level changes in healthcare financing, organisation and delivery and use discretion when bringing up environmental concerns in their encounters with patients. (shrink)

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

When weighing up which inhaler to prescribe, a doctor may prioritise a patient’s preferences over the expected harms from the associated carbon emissions. Parker argues that this is wrong.1 Doctors have a pro-tanto duty to switch from a high-carbon metered-dose inhaler (MDI) to a low-carbon dry-powdered inhaler (DPI)—even though this provides no direct patient benefit—unless switching would undermine trust or significantly worsen a patient’s health. He goes on to state that even if DPIs are more expensive for (...) the National Health Service (NHS) then this is justified so long as it does not ‘significantly threaten’ the NHS’ ability to protect and promote health. This may appear to be a radical proposal, challenging the ethical principles of autonomy, health entitlements and justly distributed resources. However, we will claim that it is only radical in so far as one perceives (A) patient autonomy and healthcare entitlements as existing within a vacuum, unrelated to other foundational ethics concerns and (B) the health consequences of a given healthcare budget are limited solely to the designated recipients rather than all affected parties. Here, we test the claim that our responsibility for promoting patient autonomy …. (shrink)

Questions concerning the parent/ patient’s autonomy are seen as one of the most important reasons for requesting Ethics Consultations. Respecting parent/ patient’s autonomy also means respecting the patient’s wishes. But those wishes may be controversial and sometimes even go beyond legal requirements. The objective of this case series of 32 ECs was to illustrate ethically challenging parent / patients’ wishes during the first stages of life and how the principle of patient’s autonomy was handled. The case (...) series has a qualitative retrospective approach. A documentary sheet was designed de novo and information was gained from EC minutes and medical charts. The cases originate from the following specialties: reproductive medicine, obstetrics and neonatology as well as two interdisciplinary cases. Through the structured EC minutes aspects of patient / parents’ wishes could be identified explicitly. Overall the patient / parents’ wishes were not supported in 61% of the cases. Central reasons for rejection of patient / parent wishes were mainly the protection of the best interest of the unborn / new-born child as well as the rejection of clinical approaches that were regarded as being substandard treatment. The study shows that treatment decisions in reproductive medicine, obstetrics and neonatology raise substantial ethical questions leading to the request for ethics consultation. The systematic case series presented here gives insight into the ethical reflection carried out to support the clinicians in their decision-making and counselling. It shows that clinicians, after using ethics consultation, make deliberate decisions that do not “automatically” fulfil the treatment requests of the patients and parents. (shrink)

It is generally accepted that morally justified healthcare rationing must be non-discriminatory and cost-effective. However, given conventional concepts of cost-effectiveness, resources spent on disabled people are spent less cost-effectively, ceteris paribus, than resources spent on non-disabled people. Thus, it is reasonable to assume that standard cost-effectiveness discriminates against the disabled. Call this thedisability discrimination problem.Part of the disability discrimination involved in cost-effectiveness stems from the way in which health-related quality of life is accounted for and measured. This paper offers and (...) defends a patient-sensitive account of health-related quality of life, which can effectively make cost-effectiveness less discriminatory against the disabled and thus more morally justified. (shrink)

Background Working as an ambulance nurse involves facing ethically problematic situations with multi-dimensional suffering, requiring the ability to create a trustful relationship. This entails a need to be clinically trained in order to identify ethical conflicts. Aim To describe ethical conflicts in patient relationships as experienced by ambulance nursing students during clinical studies. Research design An exploratory and interpretative design was used to inductively analyse textual data from examinations in clinical placement courses. Participants The 69 participants attended a 1-year (...) educational programme for ambulance nurses at a Swedish university. Ethical considerations The research was conducted in accordance with the Declaration of Helsinki. Participants gave voluntary informed consent for this study. Findings The students encountered ethical conflicts in patient relationships when they had inadequate access to the patient’s narrative. Doubts regarding patient autonomy were due to uncertainty regarding the patient’s decision-making ability, which forced students to handle patient autonomy. Conflicting assessments of the patient’s best interest added to the conflicts and also meant a disruption in patient focus. The absence of trustful relationships reinforced the ethical conflicts, together with an inadequacy in meeting different needs, which limited the possibility of providing proper care. Discussion Contextual circumstances add complexity to ethical conflicts regarding patient autonomy, dependency and the patient’s best interest. Students felt they were fluctuating between paternalism and letting the patient choose, and were challenged by considerations regarding the patient’s communication and decision-making ability, the views of third parties, and the need for prioritisation. Conclusion The essence of the patient relationship is a struggle to preserve autonomy while focusing on the patient’s best interest. Hence, there is a need for education and training that promotes ethical knowledge and ethical reflection focusing on the core nursing and caring values of trust and autonomy, particularly in situations that affect the patient’s decision-making ability. (shrink)

The principle of autonomy is widely recognized to be of utmost importance in bioethics; however, we argue that this principle is often misapplied when one fails to distinguish two different contexts in medicine. When a particular patient is offered treatment options, she has the ultimate say in whether to proceed with any of those treatments. However, when deciding whether a particular intervention should be regarded as a form of medical treatment in the first place, it is the medical community (...) who has the ultimate say. Some argue that particular interventions should be allowed by virtue of the fact that they are autonomously requested. But making such an argument fails to distinguish between these two contexts and misapplies the principle of autonomy, ultimately having the potential to instigate problematic changes in the practice of medicine. (shrink)

Objectives: Evidence based patient choice seems based on a strong liberal individualist interpretation of patient autonomy; however, not all patients are in favour of such an interpretation. The authors wished to assess whether ideals of autonomy in clinical practice are more in accordance with alternative concepts of autonomy from the ethics literature. This paper describes the development of a questionnaire to assess such concepts of autonomy.Methods: A questionnaire, based on six moral concepts from the ethics literature, was sent (...) to aneurysm patients and their surgeons. The structure of the questionnaire was assessed by factor analysis, and item reduction was based on reliability.Results: Ninety six patients and 58 surgeons participated. The questionnaire consisted of four scales. Two of the scales reflected the paternalistic and consumerist poles of the liberal individualist model, one scale reflected concepts of Socratic autonomy and of procedural independence, and the fourth scale reflected ideals of risk disclosure.Discussion: The Ideal Patient Autonomy Scale is a 14 item normative instrument. It is clearly distinct from the generally used psychological preference questionnaires that assess preferences for physician-patient roles. (shrink)

This paper throws some light on the nature of argumentation, its use and advantages, within the setting of doctor–patient interaction. It claims that argumentation can be used by doctors to offer patients reasons that work as ontological conditions for enhancing the decision making process, as well as to preserve the institutional nature of their relationship with patients. In support of these claims, selected arguments from real-life interactions are presented in the second part of the paper, and analysed by means (...) of a model of argumentation borrowed from classical rhetoric, and refined according to the modern orientation of the pragma-dialectic approach. (shrink)

Recently adopted health care practices and policies describe themselves as “patient-centered care.” The meaning of the term, however, remains contested and obscure. This paper offers a typology of “patient-centered care” models that aims to contribute to greater clarity about, continuing discussion of, and further advances in patient-centered care. The paper imposes an original analytic framework on extensive material covering mostly US health care and health policy topics over several decades. It finds that four models of patient-centered (...) care emphasize: patients versus their parts; patients versus providers; patients/providers/states versus “the system”; and patients and providers as persons. Each type is distinguishable along three dimensions: epistemological orientations, practical accommodations, and policy tools. Based on this analysis, the paper recommends that four questions be asked of any proposal that claims to provide patient-centered care: Is this care a means to an end or an end in itself? Are patients here subjects or objects? Are patients here individuals or aggregates? How do we know what patients want and need? The typology reveals that models are neither entirely compatible nor entirely incompatible and may be usefully combined in certain practices and policies. In other instances, internal contradictions may jeopardize the realization of coherent patient-centered care. (shrink)

The slogan “Do Your Own Research” (DYOR) is often invoked by people who are distrustful, even downright sceptical, of recognized expert authorities. While this slogan may serve various rhetorical purposes, it also expresses an ethic of inquiry that valorises independent thinking and rejects uncritical deference to recognized experts. This paper is a qualified defence of this ethic of inquiry in one of the central contexts in which it might seem attractive. I use several case studies of patient activist groups (...) to argue that these groups often engage in valuable independent research that advances biomedical knowledge. In doing so they demonstrate the value of “lay expertise” and the epistemic as well as political necessity of not simply deferring to recognized experts. I also give some reasons why patient activist groups often produce valuable biomedical knowledge: they are examples of what I call “research collectives”. Research collectives are research communities that differ from the traditional research communities we find in universities and research institutes in that their members typically lack formal relevant scientific credentials and training. But they are similar in that they have internal structures—training procedures, norms of discussion, venues for holding discussions—that facilitate the production of knowledge. I finish by suggesting that future research into the differences and similarities between research collectives and traditional research communities is required. (shrink)

The dominant discourse in chronic disease management centres on the ideal of person-centred healthcare, with an empowered patient taking an active role in decision-making with their healthcare provider. Despite these encouraging developments toward healthcare democracy, many person-centred conceptions of healthcare and programming continue to focus on the healthcare institution’s perspective and priorities. In these debates, the patient’s voice has largely been absent. This article takes the example of patient empowerment to show how the concept has been influenced (...) by a variety of competing and shifting influences that have led to conceptualisations and programming designed for the patient, but developed without the patient. The framework of epistemic injustice is proposed to unravel the complexity of these omissions. The concept can be defined as a wrong done to someone specifically in their capacity as a knower. It occurs when a person is ignored or not believed due to a prejudice of some kind. It has been applied to healthcare in order to better understand barriers for patient participation and will be used to better understand the problems with current empowerment definitions and implementation strategies. The article will end by proposing some methodologies to facilitate patient-developed concepts of empowerment. (shrink)

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

The literature on patient public involvement and engagement (PPIE) in health research has grown significantly in the last decade, with a diverse range of definitions and topologies promulgated. This has led to disputes over what the central functions and purpose of PPIE in health research is, and this in turn makes it difficult to assess and evaluate PPIE in practice. This paper argues that the most important function of PPIE is the attempt to make health research more democratic. Bringing (...) this function to the fore and locating PPIE in the wider context of changes in contemporary forms of democratic engagement provides greater conceptual clarity over what PPIE in research should be trying to achieve. Conceptualizing PPIE as a form of democratization has a number of benefits. First, theories of what are appropriate, normatively justifiable and workable criteria for PPIE practices can be developed, and this can provide tools to address the legitimacy and accountability questions that have troubled the PPIE community. Second, this work can be used to form the basis of a research agenda to investigate how PPIE in health research operates, and how it can facilitate and/or improve democratic processes in health research. (shrink)

The purpose of this article is to discuss the ethical issues impacting the phenomenon of patient safety and to present implications for nursing management. Previous knowledge of this perspective is fragmented. In this discussion, the main drivers are identified and formulated in ‘the ethical imperative’ of patient safety. Underlying values and principles are considered, with the aim of increasing their visibility for nurse managers’ decision-making. The contradictory nature of individual and utilitarian safety is identified as a challenge in (...) nurse management practice, together with the context of shared responsibility and identification of future challenges. As a conclusion, nurse managers play a strategic role in patient safety. Their role is to incorporate ethical values of patient safety into decision-making at all levels in an organization, and also to encourage clinical nurses to consider values in the provision of care to patients. Patient safety that is sensitive to ethics provides sustainable practice where the humanity and dignity of all stakeholders are respected. (shrink)

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

The Patient Preference Predictor (PPP) is intended to improve treatment decision making for incapacitated patients. The PPP would collect information about the treatment preferences of people with different demographic and other characteristics. It could be used to indicate which treatment option an individual patient would be most likely to prefer, based on data about the preferences of people who resemble the patient. The PPP could be incorporated into existing US law governing treatment for incapacitated patients, although it (...) is unclear whether it would be classified as evidence of a specific patient’s preferences or those of a reasonable person sharing certain characteristics with the patient. Ethical concerns about the quality and significance of PPP choices could influence legal decision makers’ views of the PPP. (shrink)

When the clinician and patient are unable to reconcile differences over treatment, does this mean the latter lacks capacity to decide in such matters? Wellesleyet alanalyse the legal judgements in the case of Ms Sudiksha Thirumalesh where, on the particulars, the Court of Protection answered yes, only for the Court of Appeal to disagree. The authors highlight concerns about using isolated false belief as an indicator of incapacity and advise that such matters may be better resolved by greater discussion (...) of the benefits and burdens of treatment, alongside consideration of their costs. Here, I suggest that a disability perspective is also helpful to such cases, recognising that this was a disagreement from which the patient couldn't walk away. Disability means that particular care is required when considering the burdens and benefits of treatment as these may vary widely in the eye of the beholder. Second, the costs of litigation are particularly high when a disabled person, with life-limiting illness, is left feeling they are using precious time and energy arguing for their existence. Third, any such legal judgments ought to make clear what reasonable adjustments have been offered to include the disabled person in proceedings. Fourth, and relatedly, such disputes should be attentive to the significant risk of epistemic injustice, where disabled patients find themselves less believed, in part because the ‘able-bodied’ have not shared their experiences. Together, these considerations (i) add to the call made by Wellesleyet alfor better discussions and (ii) suggest that early involvement of Rehabilitation Medicine, with expertise in disability and related ethics, could offer an important means to reduce the need for such litigation in the future. (shrink)

The journey through the history of nursing, and its philosophical and political influences of the moment, contextualizes the interest that arose about the nurse–patient relationship after World War II. The concept has always been defined as a relationship but, from a phenomenological approach based on a historical, philosophical, psychological and sociological cosmology, it is possible to re‐conceptualize it as ‘caring interaction’. Under the vision of aesthetics and sociopoetics, the object of nursing care is the most delicate, vulnerable and unrepeatable (...) raw material: the person, whose feelings and reciprocity, which must be considered. In addition, it involves the adoption of the socio‐critical paradigm, as it considers the importance of actively involving the person, not just patient anymore, or their family in the nursing cares, optimizing the reciprocity inherent to this interactivity. In short, our philosophical and epistemological approach to the concept of nurse–patient relationship proposes a new conceptualization of it as a caring interaction. (shrink)

ObjectiveIn Belgium, people with an incurable psychiatric disorder can file a request for euthanasia claiming unbearable psychic suffering. For the request to be accepted, it has to meet stringent legal criteria. One of the requirements is that the patient possesses decision-making capacity. The patient’s decision-making capacity is assessed by physicians.The objective of our study is to provide insight in the assessment of decision-making capacity in the context of euthanasia for patients with psychic suffering caused by a psychiatric disorder.MethodTwenty-two (...) semistructured interviews with psychiatrists and neurologists were analysed with NVivo, a qualitative analysis software to code and organise transcribed data.ResultsDifferent views and approaches regarding decision-making capacity in the context of euthanasia emerged from the data.Most of the physicians have some knowledge of the cognitive ability approach on decision-making capacity. According to this approach, four abilities constitute decision-making capacity: communication, understanding, appreciation and reasoning. We observed differences in the way these abilities are valued in relation to competence. Some physicians take additional elements into consideration when assessing decision-making capacity.Physicians acquired their knowledge on the subject in many different ways. Most of the physicians reported that decision-making capacity was not part of their training.ConclusionWe conclude that physicians assess decision-making capacity in different ways and that personal values and beliefs influence their approach. As such, a common approach in assessing the decision-making capacity of a patient among the interviewed physicians is lacking. Less arbitrariness could be obtained by consistently implementing the cognitive ability approach. (shrink)

Muslim physicians and Islamic jurists analyze the moral dimensions of biomedicine using different tools and processes. While the deliberations of these two classes of experts involve judgments about the deliverables of the other's respective fields, Islamic jurists and Muslim physicians rarely engage in discussions about the constructs and epistemic frameworks that motivate their analyses. The lack of dialogue creates gaps in knowledge and leads to imprecise guidance. In order to address these discursive and conceptual gaps we describe the sources of (...) knowledge and reasoning employed by Islamic jurists and clinicians to resolve the question of when a patient must seek healthcare. As we examine both the scriptural evidence and legal reasoning of jurists and the types of medical evidence used by clinicians to address the same question, we draw attention to the epistemic frameworks and constructs at play and identify how constructs from one field may sharpen the deliberative exercises of the other. Hence our work advances discourses at the intersection of Islam and medicine and offers building blocks for a comprehensive Islamic framework that fully integrates the deliverables of medical science within the deliberations of Islamic jurists. (shrink)

ObjectivePatient involvement is used to describe the inclusion of patients as active participants in healthcare decision-making and research. This study aimed to investigate incoming year 1 medical (MBChB) students’ attitudes and opinions regarding patient involvement in this context.MethodsWe established a staff–student partnership to formulate the design of an online research survey, which included Likert scale questions and three short vignette scenarios designed to probe student attitudes towards patient involvement linked to existing legal precedent. Incoming year 1 medical students (...) (n=333) were invited to participate in the survey before formal teaching commenced.ResultsSurvey data (49 participants) indicate that students were broadly familiar with, and supportive of, patient involvement in medical treatment. There was least support for patient involvement in conducting (23.9%), contributing to (37.0%) or communicating research (32.6%), whereas there was unanimous support for patients choosing treatment from a selection of options (100%).ConclusionIncoming members of the medical profession demonstrate awareness of the need to actively involve patients in healthcare decision-making but are unfamiliar with the utility and value of such involvement in research. Further empirical studies are required to examine attitudes to patient involvement in healthcare. (shrink)

We commend Mergenthaler and colleagues for bringing the topic of patient recruitment and consent in intracranial electrophysiology research to the attention of the neuroethics community. Mergenthal...

The growth of managed care was accompanied by concern about the impact that changes in health care organization would have on the doctor-patient relationship. We now are in a “post-managed care era,” where some of these changes in health care delivery have come to pass while others have not. A re-examination of the DPR in this setting suggests some surprising results. Rather than posing a new and unprecedented threat, managed care was simply the most recent of numerous strains on (...) the DPR that have occurred throughout the century. These strains are a constant, inevitable consequence of the varying needs and concerns of patient and physicians as they seek to balance their desires for a certain type of DPR with their simultaneous desire for other aspects of care such as lower costs, greater technological sophistication, and improved outcomes. (shrink)

Patrick Lee and Germain Grisez have argued that the total brain dead patient is still dead because the integrated entity that remains is not even an animal, not only because he is not sentient but also, and more importantly, because he has lost the radical capacity for sentience. In this essay, written from within and as a contribution to the Catholic philosophical tradition, I respond to Lee and Grisez’s argument by proposing that the brain dead patient is still (...) sentient because an animal with an intact but severed spinal cord can still perceive and respond to external stimuli. The brain dead patient is an unconscious sentient organism. (shrink)

A review of the philosophical debate on theoretical models for the physician-patient relationship over the past fifteen years may point to some of the more productive questions for future research. Contractual models have been criticized for promoting a legalistic and minimalistic image of the relationship, such that another form of model (such as convenant) is required. Shifting from a contractual to a contractarian model (in keeping with Rawls' notion of an original position) provides an adequate response to many criticisms (...) of this type. A deeper criticism, however, is one that advocates a shift to a virtue-based approach. A creative amalgam between a contractarian model and elements of the virtue-based approach, combined with appropriate empirical investigation, may yield richer models in the future. (shrink)

The rule that a patient should give a free, fully-informed consent to any therapeutic intervention is traditionally thought to express merely a right of the patient against the physician, and a duty of the physician towards the patient. On this view, the patient may waive that right with impugnity, a fact sometimes expressed in the notion of a right not to know. This paper argues that the rule also expresses a duty of the patient towards (...) the physician and a right of the physician against the patient. The argument turns, first, on the truism that a physician has no obligation to commit a battery, or unauthorized touching, and, second, on the thesis that a patient necessarily cannot consent to something that is unknown to him. The conclusion is drawn that a patient is not free to receive treatment voluntarily without knowledgeably authorizing it. CiteULike Connotea Del.icio.us What's this? (shrink)

Long used as a tool for medical compliance and adhering to treatment plans, behavior contracts have made their way into the in-patient healthcare setting as a way to manage the “difficult” patient and family. The use of this tool is even being adopted by healthcare ethics consultants (HECs) in US hospitals as part of their work in navigating conflict at the bedside. Anecdotal evidence of their increasing popularity among clinical ethicists, for example, can be found at professional bioethics (...) meetings and conversations and idea-sharing among practitioners on HEC social media. While there are a handful of papers gesturing toward a bioethical critique of behavior contracts of various types, the use of behavior contracts in the context of interpersonal conflict has not been vetted by bioethicists to determine their ethical legitimacy or efficacy. In this paper, we highlight a set of ethical concerns that we believe must be addressed before continuing or widespread implementation of behavior contracts to manage the “difficult” patient or family. (shrink)

The “patient perspective” serves as an analytical tool to present patients as knowing subjects in research, rather than as objects known by medicine. This paper analyses problems encountered with the concept of the patient perspective as applied to long-term mental health care. One problem is that “having a perspective” requires a perception of oneself as an individual and the ability to represent one’s individual situation in language; this excludes from research patients who do not express themselves verbally. Another (...) problem is that the idea of “talk” as a representation of the world ignores the fact that talk is also performative in the world: it requires, at least, the ability to deal with an interview situation. To think up alternative ways of including patients as subjects in research, I develop an approach that takes this performativity as a starting point. Analysing practical situations and activities, I argue that patients enact appreciations, making known what they like or dislike by verbal or non-verbal means in a given material environment, in situations that are co-produced by others. Thus, subjectivity is linked to situations and interactions, rather than just to individual characteristics; to “patient positions,” rather than “patient perspectives.”. (shrink)

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

The twenty‐six‐year‐old patient requested a prophylactic bilateral mastectomy with reconstruction because of an extensive family history of cancer. She reported that she had developed melanoma at twenty‐five; that her mother, sister, aunts, and a cousin all had breast cancer; that a cousin had ovarian cancer at nineteen; and that a brother was treated for esophageal cancer at fifteen. The treating team was skeptical about this history, and they could find no documentation of the patient's reported melanoma. The surgeon (...) wrote the patient's primary care physician, explaining that he had seen the patient and planned to proceed with the bilateral mastectomy and reconstruction. The primary care physician responded that he was unable to substantiate several of the patient's claims; some of his colleagues believed the family history to be fabricated. Trying to make sense of the discrepancies, the genetic counselor called a counselor colleague who had met with this patient. The colleague suggested that the in‐house genetic counselor “google” the patient. The search revealed two Facebook pages linked to the patient. In one, apparently a personal profile, the patient stated that in addition to battling stage four melanoma, she had recently been diagnosed with breast cancer. She provided a link to a site where she solicited donations to attend a summit for young cancer patients. The other Facebook page featured numerous pictures of her with a bald head, as though she has been through chemotherapy. The genetic counselor showed the Facebook pages to the surgeon, who then decided not to operate. Should health care professionals “google” their patients? (shrink)

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

National legislation, as well as arguments of experts, in Germany and Israel represent opposite regulatory approaches and positions in bioethical debates concerning end-of-life care. This study analyzes how these positions are mirrored in the attitudes of laypeople and influenced by the religious views and personal experiences of those affected. We qualitatively analyzed eight focus groups in Germany and Israel in which laypeople were asked to discuss similar scenarios involving the withholding or withdrawing of treatment, physician-assisted suicide, and euthanasia. In both (...) countries, respect for patient autonomy and patients’ wishes to die with dignity found broad consent. Laypeople argued in favor of accepting such wishes when they were put down in an advance directive. Laypeople in non-religious groups in both countries argued on the basis of a respect for autonomy for the possibility of euthanasia in severe cases but, at the same time, cautioned against its possible misuse. National contrast was apparent in the moral reasoning of lay respondents concerning the distinction between withholding and withdrawing treatment. The modern religious laypeople in Israel, especially, argued strongly, on the basis of the halakhic tradition, against allowing the withdrawal of treatment in accord with a patient’s wish. We conclude by discussing the emergent notion of shared responsibility and views of professional responsibility, which we connect through relevant cultural themes such as religion and national culture. (shrink)

Background Biobank participants often do not understand much of the information they are provided as part of the informed consent process, despite numerous attempts at simplifying consent forms and improving their readability. We report the first assessment of biobank enrollees’ comprehension under an "integrated consent” process, where patients were asked to enroll in a research biobank as part of their normal healthcare experience. A number of healthcare systems have implemented similar integrated consent processes for biobanking, but it is unknown how (...) much patients understand after enrolling under these conditions. Methods: We recruited patients who enrolled in a biobank while in a healthcare setting when receiving ordinary care. We assessed knowledge of consent materials using 11 true/false questions drawn from a well-known biobank knowledge test. After reviewing the results from 114 participants, we revised the consent form and repeated the knowledge assessment with 144 different participants. Results: Participants scored poorly on the knowledge test in both rounds, with no significant differences in overall scores or individual items between the rounds. In Phase 1, participants answered 53% of the questions correctly, 25% incorrectly, and 22% “I don’t know.” In Phase 2, participants answered 53% of questions correctly, 24% incorrectly, and 23% “I don’t know.” Participants scored particularly poorly on questions about data sharing and accessing medical records. Conclusions: Enrollees under an integrated consent model had significant misunderstandings that persisted despite an attempt to improve information specifically about those topics in a consent form. These results raise challenges for current approaches that attribute misunderstanding to overly complex consent forms. They also suggest that the pressures of the clinic may compound other problems with patient understanding of biobank consent. As health systems increasingly blend research and care, they may need to rethink their approach to educating patients about participation in a biobank. (shrink)

When it comes to using patient data from the National Health Service for research, we are often told that it is a matter of trust: we need to trust, we need to build trust, we need to restore trust. Various policy papers and reports articulate and develop these ideas and make very important contributions to public dialogue on the trustworthiness of our research institutions. But these documents and policies are apparently constructed with little sustained reflection on the nature of (...) trust and trustworthiness, and therefore are missing important features that matter for how we manage concerns related to trust. We suggest that what we mean by ‘trust’ and ‘trustworthiness’ matters and should affect the policies and guidance that govern data sharing in the NHS. We offer a number of initial, general reflections on the way in which some of these features might affect our approach to principles, policies and strategies that are related to sharing patient data for research. This paper is the outcome of a ‘public ethics’ coproduction activity which involved members of the public and two academic ethicists. Our task was to consider collectively the accounts of trust developed by philosophers as they applied in the context of the NHS and to coproduce an argumentative position relevant to this context. (shrink)

Abstract.This paper responds to the Expert Patient initiative by questioning its over-reliance on instrumental forms of reasoning. It will be suggested that expertise of the patient suffering from chronic illness should not be exclusively seen in terms of a model of technical knowledge derived from the natural sciences, but should rather include an awareness of the hermeneutic skills that the patient needs in order to make sense of their illness and the impact that the illness has upon (...) their sense of self-identity. By appealing to MacIntyre’s concepts of “virtue” and “practice”, as well as Frank’s notion of the “wounded story-teller”, it will be argued that chronic illness can be constituted as a practice, by building a culture of honest and courageous story-telling about the experience of chronic suffering. The building of such a practice will renew the cultural resources available to the patient, the physician and the rest of the community in understanding illness and patient-hood. (shrink)

BackgroundA patient who fulfils the due diligence requirements for euthanasia, and is medically suitable, is able to donate his organs after euthanasia in Belgium, the Netherlands and Canada. Since 2012, more than 70 patients have undergone this combined procedure in the Netherlands. Even though all patients who undergo euthanasia are suffering hopelessly and unbearably, some of these patients are nevertheless willing to help others in need of an organ. Organ donation after euthanasia is a so-called donation after circulatory death (...) (DCD), Maastricht category III procedure, which takes place following cardiac arrest, comparable to donation after withdrawal of life sustaining therapy in critically ill patients. To minimize the period of organ ischemia, the patient is transported to the operating room immediately after the legally mandated no-touch period of 5 min following circulatory arrest. This means that the organ donation procedure following euthanasia must take place in the hospital, which appears to be insurmountable to many patients who are willing to donate, since they already spent a lot of time in the hospital. Case presentationThis article describes the procedure of organ donation after euthanasia starting at home (ODAEH) following anesthesia in a former health care professional suffering from multiple system atrophy. This case is unique for at least two reasons. He spent his last conscious hours surrounded by his family at home, after which he underwent general anaesthesia and was intubated, before being transported to the hospital for euthanasia and organ donation. In addition, the patient explicitly requested the euthanasia to be performed in the preparation room, next to the operating room, in order to limit the period of organ ischemia due to transport time from the intensive care unit to the operating room. The medical, legal and ethical considerations related to this illustrative case are subsequently discussed.ConclusionsOrgan donation after euthanasia is a pure act of altruism. This combined procedure can also be performed after the patient has been anesthetized at home and during transportation to the hospital. (shrink)