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)

For a few decades, patients with Parkinson's disease have been treated with intracerebral transplantations of fetal mesencephalic tissue. The results of open trials have been variable. Double blind, placebo-controlled studies have recently been started in order to further investigate the efficacy of this new medical technique. In this paper we challenge the need for sham surgery in neurotransplantation research on PD patients. Considerations regarding the research subjects' informed consent, therapeutic misconception, the integrity of the human body, and the (...) assessment of risks and benefits argue against sham surgery for patients with PD. Moreover, there is an alternative, less harmful mode of research that can provide the same or comparable scientific evidence. A plea is made for intrapatient research based on quantitative measurements of the patient's pre- and post-operative condition combined with similar research on a reference group of patients who have received the standard treatment. (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)

This paper proposes a refocusing of consent for clinical genetic testing, moving away from an emphasis on autonomy and information provision, towards an emphasis on the virtues of healthcare professionals seeking consent, and the relationships they construct with their patients. We draw on focus groups with UK healthcare professionals working in the field of clinical genetics, as well as in-depth interviews with patients who have sought genetic testing in the UK’s National Health Service. We explore two aspects of (...) consent: first, how healthcare professionals consider the act of ‘consenting’ patients; and second how these professional accounts, along with the accounts of patients, deepen our understanding of the consent process. Our findings suggest that while healthcare professionals working in genetic medicine put much effort into ensuring patients’ understanding about their impending genetic test, they acknowledge, and we show, that patients can still leave genetic consultations relatively uninformed. Moreover, we show how placing emphasis on the informational aspect of genetic testing is not always reflective of, or valuable to, patients’ decision-making. Rather, decision-making is socially contextualised – also based on factors outside of information provision. A more collaborative on-going consent process, grounded in virtue ethics and values of honesty, openness and trustworthiness, is proposed. (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)

Chronic pain patients often miss receiving acknowledgement for the multidimensional struggles they face with their specific conditions. People suffering from chronic pain experience a type ofinvisibilitythat is also borne by other chronically ill people and their respective medical conditions. However, chronic pain patients face both passive and active exclusion from social participation in activities like family interactions or workplace inclusion. Although such aspects are discussed in the debates lead by the bio-psycho-social model of pain, there seems to be (...) a lack of a distinct interest in assessing more specifically the social aspects regarding chronic pain. As a result, the social aspects have yet to be taken into a more thorough theoretical consideration of chronic pain and to be practically implemented to help affected patients. By addressing chronic pain patients’ struggle for recognition, this paper attempts to shed light on some of these social aspects. We base this attempt on a theoretical framework that combines patients’ statements with an adaptation of Axel Honneth’s social-philosophical work onrecognition. Thus, this paper tries to make a suggestion on how the bio-psycho-social model of pain can live up to its name by helping to address more adequately some of the more neglected aspects in chronic pain patients’ suffering than has been possible to date. (shrink)

Objectives: The aim of this study is to evaluate the views of cancer patients on patient rights in the context of the right to information and autonomy according to articles related to the issue in the “Patient Rights Regulation”. Methods: The research was conducted among cancer patients in the medical oncology department of a research and practice hospital using a random sampling method between June and September 2005. Data were collected during face-to-face interviews using a questionnaire. Results: There (...) was a high rate of positive response to the items that the patients have the right to be informed (86.5%), that the physician should inform the patient on the diagnosis and the treatment (92.3%) and that the physician is obliged to inform the patient (76.9%). Only 43.3% of the patients stated that the patient has the right to refuse the treatment recommended by the physician. The participants mostly agreed that the patient should participate in decisions about the treatment and that patient consent should be given (78.8%). Conclusions: There are extensive efforts in Turkey towards making patient rights a significant supportive component of health services. For patient rights to become a natural part of medical practice it is necessary to give priority to education of both patients and physicians about patient rights and to lay emphasis on an ethical approach in the patient–physician relationship. (shrink)

This study conducted a cross-sectional investigation of facial appearance dissatisfaction between patients before undergoing orthognathic surgery and a non-surgical sample to evaluate the potential influencing factors of facial appearance dissatisfaction. A sample of 354 participants completed a set of questionnaires concerning facial appearance dissatisfaction, interpersonal pressure, media pressure, and fear of negative appearance evaluation (112 patients, 242 controls). The patients reported higher facial appearance dissatisfaction, more media pressure, more interpersonal pressure, and a greater fear of negative appearance (...) evaluation among others than the control group. Moreover, regression analyses identified interpersonal pressure and fear of negative appearance evaluation as the main influencing factors on facial appearance dissatisfaction whether in the orthognathic patients or in the control groups. The associations between the perceptions of interpersonal pressure, fear of negative appearance evaluation, and facial appearance dissatisfaction support the possible utility of strengthening social experiences and psychological intervention in preventing and treating these appearance-concerns, especially for the orthognathic patients. (shrink)

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

According to policy makers, telemedicine offers “huge opportunities to improve the quality and accessibility of health services.” It is defined as diagnosis, treatment, and monitoring, with doctors and patients separated by space but mediated through information and communication technologies. This mediation is explored through an ethnography of a U.K. teledermatology clinic. Diagnostic image transfer enables medicine at a distance, as patients are removed from knowledge generation by concentrating their identities into images. Yet that form of identity allows images (...) and the expert gaze to be brought into potentially lifesaving proximity. Following Latour’s thread, images must be captured and then mobilized to the knowledge base, where they must be stabilized into standard diagnoses, then combined with different images, waiting lists, skin lesions, dermatologists, paper records, and beds, so that ultimately, outcomes are produced. This huge task requires new knowledges and a widening of agency that, if unacknowledged, may see telemedicine projects continue to founder. (shrink)

The University of Pittsburgh Medical Center (UPMC) "Policy for the Management of Terminally Ill Patients Who May Become Organ Donors after Death" proposes to take organs from certain patients as soon as possible after expected cardiopulmonary death. This policy requires clear understanding of the descriptive state of the donor's critical cardiopulmonary and neurologic functional capacity at the time interventions to sustain or harvest organs are undertaken. It also requires strong consensus about the moral and legal status of the (...) donor during dying and confirmation of death. There has been no need for the clarity and precision that this policy relies upon, and thus the needed research and conceptual work has not previously been generated. The empiric base and societal consensus are both too frail to provide justification for this policy at this time. (shrink)

Decisions about brain surgery pose existential challenges because they are often decisions about life or death, and sometimes about possible personality changes. Therefore they require rigorous neuroethical consideration. However, we doubt whether metaphysical interpretations of ambiguous statements of patients are useful for deriving ethical and legal conclusions. Particularly, we question the application of psychological theories of personal identity on neuroethical issues for several reasons. First, even the putative “standard view” on personal identity is contentious. Second, diverse accounts of personal (...) identity have been introduced into the neuroethical debate, which are incompatible. Third, the criteria for “diagnosing” the supposed changes in “identity” are ambiguous and indeterminate. Fourth, the metaphysical theories of personal identity imply highly questionable ethical and legal revisions, namely the denial of advance directives, particularly of Ulysses contracts, and, for patients with brain cancer, even therapeutic nihilism.We discuss three examples in which ideas from the personal identity debate in metaphysics are straightforwardly applied to discuss ethical issues of neurosurgery. We discuss revisions of the current medico-legal practice that have been proposed on grounds of psychological theories of personal identity. We argue that the established status quo in law and clinical practice is beneficial to the patients concerned. Furthermore, it is metaphysically neutral, which is an important principle of liberal, democratic, pluralistic societies.We recommend a pragmatic approach: empirical research on personality changes arising from brain disorders or interventions, comprehensive information about risks of personality changes, and advance directives, particularly Ulysses contracts. (shrink)

In this article we report relevant data that shed light on the topic of hope and patients’ expectations in the use of DBS, for standard, approved, and established indications, based on a broader qualitative study on the ethical and social challenges that healthcare providers face in the field of DBS.

Background Little is known about communication between patients, families, and healthcare providers regarding ethical concerns that patients and families experience in the course of illness and medical care. To address this gap in the literature, we surveyed patients and family members to learn about their ethical concerns and the extent to which they discussed them with their healthcare providers. Methods We surveyed adult, English-speaking patients and family members receiving inpatient care in five hospitals in the Washington (...) DC-Baltimore metropolitan area from July 2017 to March 2020. Descriptive statistics were used to determine the frequency, comfortableness, and helpfulness of discussions regarding ethical concerns experienced when sick or receiving medical care. Univariable and multivariable stepwise logistic regression models were used to identify associations between healthcare provider and respondent characteristics and attitudes and (1) the likelihood of speaking to a healthcare provider about their ethical concern and (2) their level of comfort during these discussions. Results Of 468 respondents who experienced ethical issues, 299 (64%) reported discussing the situation with a member of their healthcare team; 74% (197/265) of respondents who had such a discussion found the discussion comfortable, and 77% (176/230) of respondents found the discussion helpful. To make discussions more comfortable and helpful, respondents proposed suggestions in open-ended responses involving (1) content and quality of communication; (2) positive healthcare provider qualities such as empathy, open-mindedness, knowledge, honesty, and trustworthiness; and (3) other contextual factors including having adequate time and available resources. Conclusions Patients and families often have ethical concerns that they discuss with clinicians, and they want clinicians to be routinely receptive and attentive to such discussions. (shrink)

This book approaches ethical and legal issues in medicine from the patient's viewpoint and argues that many patients do not want the full burden of decision making that contemporary bioethics has thrust upon them.

When patients cannot make their own treatment decisions, surrogates typically step in to do it for them. Surrogate decision‐making is far from ideal, of course, as the surrogate may not know what the patient prefers or what best promotes her interests. One way to improve it would be to arm surrogates with information about what patients in similar circumstances tend to prefer, allowing them to make empirically grounded predictions about what their patient would want.

Can we draw substantive conclusions about the reasons for action agents have from premisses about the desires of their idealized counterparts? The answer is that we can. The argument for this conclusion is Rawlsian in spirit, focusing on the choices that our idealized counterparts must make simply in virtue of being ideal, and inferring from these choices the contents of the desires that they must have. It turns out that our idealized counterparts must have desires in which we ourselves figure (...) as both agents and patients, and in which others must figure too, though only as patients. (shrink)

Introduction: Dignity is one of the most important values sensitively perceived by patients in nursing care. Older patients have been identified as having a high risk of losing their dignity in institutional care. To promote optimum nursing care, a deeper insight into the problem of older patients’ dignity is needed. Aim: The aim was to identify, analyse and synthesise the qualitative evidence of dignity views and factors affecting it from the nurses’ and older patients’ perspective in (...) the context of nursing care and to compare synthesised finding from the both perspective. Methods: A literature review of qualitative evidence was chosen as a study design. The ENTREQ statement was implemented to enhance transparency. The CASP – Qualitative checklist and the thematic synthesis for synthesised findings were used. The electronic databases Academic Search Complete, CINAHL, Health Source: Nursing/Academic Edition, MEDLINE and PROQUEST were used to gather information for qualitative studies. Results: A total of 306 papers were retrieved. Fourteen qualitative studies met the inclusion criteria and were included in the review after methodological quality assessment using CASP. Four main themes of dignity from nurses’ perspective were synthesised: seeing the patient as a unique person, communication and privacy, involving the patient, and working culture and environment. From the patients’ perspective, six main themes were synthesised: autonomy and control, privacy, relationships, care and comfort, communication and identity. The comparison shows that the key difference is that older patients highlighted the theme relationships and nurses underlined the theme working culture and environment. Conclusion: The model structures of the older patients’ dignity from both the nurses’ and patients’ perspectives support the idea of a multidimensional structure of human dignity. The resulting model might be used in a nursing self-reflection, in the management of the institutions providing all-day care for the older people and in the education and practice. (shrink)

Background: The importance of respecting patients and participants in clinical research is widely recognised. However, what it means to respect persons beyond recognising them as autonomous is unclear, and little is known about what patients find to be respectful. Objective: To understand patients’ conceptions of respect and what it means to be respected by medical providers. Design: Qualitative study from an academic cardiology clinic, using semistructured interviews with 18 survivors of sudden cardiac death. Results: Patients believed (...) that respecting persons incorporates the following major elements: empathy, care, autonomy, provision of information, recognition of individuality, dignity and attention to needs. Conclusions: Making patients feel respected, or valued as a person, is a multi-faceted task that involves more than recognising autonomy. While patients’ views of respect do not determine what respect means, these patients expressed important intuitions that may be of substantial conceptual relevance. (shrink)

In this paper, we defend three claims about what it will take for an AI system to be a basic moral patient to whom we can owe duties of non-maleficence not to harm her and duties of beneficence to benefit her: (1) Moral patients are mental patients; (2) Mental patients are true intentional systems; and (3) True intentional systems are systematically flexible. We suggest that we should be particularly alert to the possibility of such systematically flexible true (...) intentional systems developing in the areas of exploratory robots and artificial personal assistants. Finally, we argue that in light of our failure to respect the well-being of existing biological moral patients and worries about our limited resources, there are compelling moral reasons to treat artificial moral patiency as something to be avoided at least for now. (shrink)

Patient support tools have drawn on a variety of disciplines, including psychotherapy, social psychology, and social care. One discipline that has not so far been used to support patients is philosophy. This paper proposes that a particular philosophical approach, phenomenology, could prove useful for patients, giving them tools to reflect on and expand their understanding of their illness. I present a framework for a resource that could help patients to philosophically examine their illness, its impact on their (...) life, and its meaning. I explain the need for such a resource, provide philosophical grounding for it, and outline the epistemic and existential gains philosophy offers. Illness often begins as an intrusion on one’s life but with time becomes a way of being. I argue that this transition impacts on core human features such as the experience of space and time, human abilities, and adaptability. It therefore requires philosophical analysis and response. The paper uses ideas from Husserl and Merleau-Ponty to present such a response in the form of a phenomenological toolkit for patients. The toolkit includes viewing illness as a form of phenomenological reduction, thematizing illness, and examining illness as altering the ill person’s being in the world. I suggest that this toolkit could be offered to patients as a workshop, using phenomenological concepts, texts, and film clips to reflect on illness. I conclude by arguing that examining illness as a limit case of embodied existence deepens our understanding of phenomenology. (shrink)

*The views expressed are the author's own and should not be construed as representing the policies and opinions of the American Medical Association.

Poor medication adherence in patients with a psychosis is associated with relapse. It has been proposed that outcomes might be improved by using financial incentives for treatment adherence (FITA). However, a strong moral intuition against this practice has been found. This paper examines the ethics of FITA. Three arguments are presented, which if accepted would severely restrict or even prohibit the practice. These are based on (1) “incommensurable values”, where FITA denigrates an aspect of “respect for the person”, (2) (...) “exploitation”, where unfair advantage is taken of the patient, and (3) “fairness”, where it is difficult to draw a line between those who should and should not be offered payment. A number of practical impediments are also considered. (shrink)

Lower limb major amputations are both life-saving procedures and life-changing events. Individual responses to limb loss are varied and complex, some individuals experience functional, psychological and social dysfunction, many others adjust and function well. Some patients refuse amputation for religious and/or cultural reasons. One of the greatest difficulties for a person undergoing amputation surgery is overcoming the psychological stigma that society associates with the loss of a limb. Persons who have undergone amputations are often viewed as incomplete individuals. The (...) medical and physical consequences of amputation serve as the centerpiece in acute care and are commonly at the forefront of prosthetic rehabilitation. Prosthetic prescription aims to compensate for functional and/or cosmetic losses where possible. The aims of rehabilitation following amputation are to restore acceptable levels of functioning that allow individuals to achieve their goals, to facilitate personal health, and to improve participation in society and quality of life either with or without prosthesis. Our article aims at underscoring some medical, social and religious aspects that can contribute to the wellbeing of patients who suffer a life changing event such as lower limb amputation. (shrink)

Background In the US, many patients forgo recommended care due to cost. The ANA Code of Ethics requires nurses to give care based on need. Therefore, US nurses are compelled to practice in a context which breaches their professional ethical code. Research Objectives This study sought to determine if nurses do care for patients who forgo treatment due to cost (PFTDC) and if so, does this result in an experience of moral distress (MD). Research Design Semi-structured interviews were (...) transcribed and analyzed using a qualitative content analysis. Participants and Research Context A convenience sample of 20 nurses in practice for at least one year from a variety of health care setting participated. Ethical Considerations This project was approved by the Michigan State University Biomedical Institutional Review Board. Results There were 19 female and one male nurse-participants, averaging 47 years old with an average of 10 years in practice. 18 reported caring for PFTDC. These 17 nurse-participants experienced a moderate degree of MD as a result, averaging 5.4 of 10 on the Moral Distress Thermometer. In the interviews, the following themes were identified, strategies to help PFTDC, and the broken US health care system which had the subthemes of preference for business over patient-oriented benefit, PFTDC using the emergency department, and limited support for treatment/management of PFTDC. Conclusions The existence of this phenomenon places the profession of nursing in the US in a position of moral compromise and threatens to corrupt the institution of nursing in the US. (shrink)

Volume 24, Issue 8, August 2024, Page 119-120.

BackgroundResearchers currently are not obligated to share individual research results with participants. This non-disclosure policy has been challenged on the basis of participants’ rights to be aware and in control of their personal medical information. Here, we determined how patients view disclosure of research PET results of brain amyloid and why they believe it is advantageous or disadvantageous to disclose.MethodAs a part of a larger diagnostic trial, we conducted semi-structured interviews with patients with amnestic Mild Cognitive Impairment. Participants (...) had the option to receive their brain amyloid PET scan result. Interviews were conducted before they received their IRR.ResultsA total of 38 aMCI patients wanted to know their IRR. The two most frequently mentioned reasons for choosing IRR disclosure were to better understand their brain health status and to be better able to make informed decisions about future personal arrangements. Emotional risk was mentioned as the primary disadvantage of knowing one’s IRR. On the other hand, non-disclosure was considered to be emotionally difficult also, as patients would be uncertain about their future health condition.ConclusionsMany patients diagnosed clinically with aMCI want to know their brain amyloid test results, even though this knowledge may be disadvantageous to them. Knowing what is going on with their health and the ability to make informed decisions about their future were the two principal advantages mentioned for obtaining their amyloid PET results. Because of the overwhelming consensus of aMCI patients was to disclose their brain amyloid PET scan results, researchers should strongly consider releasing this information to research subjects. (shrink)

People confront their doctors with three modes of unhealth - disease, illness and sickness. Each is discussed, and the question is asked and answered as to why in this situation people wish to become patients.

Savulescu has recently introduced the "rational non-interventional paternalist" model of the patient-doctor relationship. This paper addresses objections to such a model from the perspective of an anaesthetist. Patients need to make their own decisions if they are to be fully autonomous. Rational non-interventional paternalism undermines the importance of patient choice and so threatens autonomy. Doctors should provide an evaluative judgment of the best medical course of action, but ought to restrict themselves to helping patients to make their own (...) choices rather than making such choices for them. (shrink)

This paper argues that doctors ought to make all things considered value judgments about what is best for their patients. It illustrates some of the shortcomings of the model of doctor as 'fact-provider'. The 'fact-provider' model fails to take account of the fact that practising medicine necessarily involves making value judgments; that medical practice is a moral practice and requires that doctors reflect on what ought to be done, and that patients can make choices which fail to express (...) their autonomy and which are based on mistaken judgments of value. If doctors are properly to respect patient autonomy and to function as moral agents, they must make evaluations of what their patients ought to do, all things considered. This paper argues for 'rational, non-interventional paternalism'. This is a practice in which doctors form conceptions of what is best for their patients and argue rationally with them. It differs from old-style paternalism in that it is not committed to doing what is best. (shrink)

Patients with behavioral variant of frontotemporal dementia (FTD) have difficulties recognizing facial emotions, a deficit that may contribute to their impaired social skills. In three experiments, we investigated the FTD deficit in recognition of facial emotions, by comparing six patients with impaired social conduct, nine Alzheimer’s patients, and 10 age-matched healthy adults. Experiment 1 revealed that FTD patients were impaired in the recognition of negative facial emotions. Experiment 2 replicated these findings when participants had to determine (...) whether two faces were expressing the same or different emotions. Experiment 3 was a control study in which participants had to discriminate whether two faces were of the same sex. In this non-emotional processing task, both patient groups performed worse than normal participants, but FTD patients performed as well as Alzheimer’s patients. We conclude that FTD patients are impaired in the recognition of negative facial emotions. © 2005 Elsevier Ltd. All rights reserved. (shrink)

OBJECTIVE: To ascertain attitudes to different methods of obtaining informed consent for randomised clinical trials (RCTs). DESIGN: Structured interviews with members of the public, medical secretaries and medical students. SETTING: The public were approached in a variety of public places. Medical secretaries and students were approached in their place of work. SUBJECTS: Fifty members of the public, 25 secretaries and 25 students. MAIN OUTCOME MEASURES: Views on RCTs were elicited, with particular emphasis on how subjects thought the concept of randomisation (...) should be explained. Each participant was presented with descriptions of proposed clinical trials and asked to select his or her preference from a range of options. RESULTS: Written information was preferred over verbal information in 91% of replies. Most respondents (86%) would prefer to sign a consent form. Of the seven statements explaining randomisation, a significant difference was found in favour of explanations that were less explicit about the play of chance (ANOVA; p = 0.0004). Eighty-three per cent of participants thought that randomised trials were morally acceptable when there was no prior medical preference between treatments. However, over half (55%) thought they would find it upsetting to be offered entry in such a trial and a quarter thought the outcome of treatment might be adversely affected. CONCLUSIONS: Our results offer some support for the idea that "economy with truth" is less unsettling than a frank description of the stark reality of what randomisation means. It is a matter of debate as to whether, if we are correct, autonomy should have precedence over beneficence. The offer of entry in a clinical trial is likely to affect the experience of care for many people, especially if the process of randomisation is described explicitly. Potential participants should be given a detailed written explanation of the rationale for the trial and be asked to sign a consent form if they agree to take part. (shrink)

BackgroundIn Saudi clinical settings, benevolent family care that reflects strongly held sociocultural values is commonly used to justify overriding respect for patient autonomy. Because the welfare of individuals is commonly regarded as inseparable from the welfare of their family as a whole, these values are widely believed to obligate the family to protect the welfare of its members by, for example, giving the family authority over what healthcare practitioners disclose to patients about their diagnoses and prognoses and preventing them (...) from making informed decisions about their healthcare.DiscussionFamily dominance over the healthcare decisions of competent patients is ethically problematic when the family prevent healthcare practitioners from disclosing diagnoses and prognoses to patients who have the capacity to consent and make decisions in their own best interests. Thus, the author holds that sociocultural values ought to be respected only when they do not prevent competent patients from knowing their diagnoses and prognoses or prevent them from making their own decisions.ConclusionHealthcare practitioners should not allow patients’ families to control what can or cannot be disclosed to competent patients. This is particularly important when patients are approaching death so that they may address their material and spiritual wishes—among other needs—as they prepare for death. Justification for this position is drawn from the Maqasid Al-Shariah-based Islamic bioethics approach, from which it is possible to argue that the harm of withholding diagnoses and prognoses from patients who are imminently dying outweighs the potential benefits. (shrink)

Introduction Respecting the Patients’ Rights Charter leads to the demands of patients for their rights and the response of rehabilitation therapists by increasing their compliance. The present study aimed to compare the views of patients and rehabilitation therapists about the importance and extent of compliance with the Patients’ Rights Charter. Methods This cross-sectional study was conducted for 3 months on 114 patients and 55 therapists who were selected using the convenience sampling method. The data collection (...) tools included a demographic information form and the Justification and Practice of Patient Rights Questionnaire. The collected data were analyzed using descriptive statistics, independent t-test, paired t-test, and Pearson correlation coefficient. Results Mean scores of the importance of compliance with the Patients’ Rights Charter were 2.21 ± 0.40 and 2.31 ± 0.43 in the group of patients and therapists, respectively. Moreover, the mean scores of compliance with the Patients’ Rights Charter were 1.45 ± 0.48 and 1.53 ± 0.61 from the perspective of patients and therapists, respectively. There was no statistically significant difference between the views of patients and therapists on the importance and extent of compliance with the Patients’ Rights Charter. Discussion and Conclusion The importance of respecting the Patients’ Rights Charter from the perspective of patients and therapists was at a desirable level while the level of compliance with it from the perspective of both groups was moderate. It seems that more research is needed to explain the causes of this discrepancy and increase compliance with the Patients’ Rights Charter in rehabilitation clinics. (shrink)

Working as clinical ethicists in an academic hospital, we find that practitioners tend to take a principle‐based approach to moral dilemmas when it comes to (not) treating patients who feel like a burden, in which respect for autonomy tends to trump other principles. We argue that this approach insufficiently deals with the moral doubts of professionals with regard to feeling that you are a burden as a motive to decline or withdraw from treatment. Neither does it take into adequately (...) account the specific needs of the patient that might underlie their feeling of being a burden to others. We propose a care ethics approach as an alternative. It focuses on being attentive and responsive to the caring needs of those involved in the care process—which can be much more specific than either receiving or withdrawing from treatment. This approach considers these needs in the context of the patient's identity, biography and relationships, and regards autonomy as relational rather than as individual. We illustrate the difference between these two approaches by means of the case of Mrs K. Furthermore, we show that a care ethics approach is in line with interventions that are found to alleviate feeling a burden and maintain that facilitating moral case deliberation among practitioners can supports them in taking a care ethics approach to moral dilemmas in (not) treating patients who feel like a burden. (shrink)

Last year saw the 20th anniversary edition of JECP, and in the introduction to the philosophy section of that landmark edition, we posed the question: apart from ethics, what is the role of philosophy ‘at the bedside’? The purpose of this question was not to downplay the significance of ethics to clinical practice. Rather, we raised it as part of a broader argument to the effect that ethical questions – about what we should do in any given situation – are (...) embedded within whole understandings of the situation, inseparable from our beliefs about what is the case, what it is that we feel we can claim to know, as well as the meaning we ascribe to different aspects of the situation or to our perception of it. Philosophy concerns fundamental questions: it is a discipline requiring us to examine the underlying assumptions we bring with us to our thinking about practical problems. Traditional academic philosophers divide their discipline into distinct areas that typically include logic: questions about meaning, truth and validity; ontology: questions about the nature of reality, what exists; epistemology: concerning knowledge; and ethics: how we should live and practice, the nature of value. Any credible attempt to analyse clinical reasoning will require us to think carefully about these types of question and the relationships between them, as they influence our thinking about specific situations and problems. So, the answers to the question we posed, about the role of philosophy at the bedside, are numerous and diverse, and that diversity is illustrated in the contributions to this thematic edition. (shrink)

Patients have received experimental pharmaceuticals outside of clinical trials for decades. There are no industry-wide best practices, and many companies that have granted compassionate use, or ‘preapproval’, access to their investigational products have done so without fanfare and without divulging the process or grounds on which decisions were made. The number of compassionate use requests has increased over time. Driving the demand are new treatments for serious unmet medical needs; patient advocacy groups pressing for access to emerging treatments; internet (...) platforms enabling broad awareness of compelling cases or novel drugs and a lack of trust among some that the pharmaceutical industry and/or the FDA have patients’ best interests in mind. High-profile cases in the media have highlighted the gap between patient expectations for compassionate use and company utilisation of fair processes to adjudicate requests. With many pharmaceutical manufacturers, patient groups, healthcare providers and policy analysts unhappy with the inequities of the status quo, fairer and more ethical management of compassionate use requests was needed. This paper reports on a novel collaboration between a pharmaceutical company and an academic medical ethics department that led to the formation of the Compassionate Use Advisory Committee. Comprising medical experts, bioethicists and patient representatives, CompAC established an ethical framework for the allocation of a scarce investigational oncology agent to single patients requesting non-trial access. This is the first account of how the committee was formed and how it built an ethical framework and put it into practice. (shrink)

In their article “What are Humans Doing in the Loop? Co-Reasoning and Practical Judgment When Using Machine Learning-Driven Decision Aids,” Salloch and Eriksen (2024) propose involving patients as...

Background: Nurses have always been known as an advocate for the rights of patients. The recognition of what is perceived as the violation of patients’ rights can help nurses to understand patients’ concerns and priorities. Thus, it helps nurses play their supportive roles more effectively. Objective: The aim of this study was to explore different dimensions of the violation of patients’ rights. Research design: Data were collected utilizing unstructured interviews and field notes. Data analysis was conducted (...) using the qualitative content analysis approach. Prolonged engagement, maximum variation sampling, and member check were among the factors which enriched the research. Participants and research context: The sample consisted of 18 patients and 11 members of their families. They were purposively selected from two hospitals in Tehran during 2009–2012. Ethical considerations: The research was approved by the Ethics Committee of the university and hospitals. Finding: The patients’ rights were violated in a variety of ways. There were three main dimensions to this issue: (a) care recession including deprivation of the caregiver’s presence and the delay/lack of needed responses; (b) receiving mechanical care including superficiality, lack of emotion, and failure to understand the situation; and (c) being disrespected including humility and aggression. Conclusion: The patients and their families consider any shortcomings in relation to the patient and the quality of care as the violation of the rights. The findings of the study imply sensitizing managers toward providing appropriate conditions as well as educating nurses to observe patients’ rights. It is suggested that the processes leading to the violation of patients’ rights be discovered and prevented in the future. (shrink)

Compared with mainstream medicine and complementary and alternative therapies, the practice of psychotherapy has enjoyed a relative pass when it comes to ethical evaluation. Therefore, contributions to the, although slowly growing, body of literature on psychotherapy ethics are to be welcomed. In his paper ‘Psychotherapy, placebos, and informed consent’, Garson Leder takes issue with what he calls the ‘go open’ project in psychotherapy ethics—the idea that the so-called ‘common factors’ in therapy should be disclosed to prospective patients. Although Leder (...) does not give a detailed list, the common factors include therapist characteristics, patient characteristics, and the working alliance. He argues that the project advocating disclosure of these factors is flawed on two grounds: that information about common factors is not necessary for informed consent; and clarity about specific mechanisms of change in therapy is consistent with ‘many theory-specific forms of psychotherapy’. There are multiple serious problems with Leder’s critique of the recent literature, including how he represents the contours of the debate, which I list, and address in this response. (shrink)