There is a growing body of literature concerning factors that can influence patients’ perception, preferences, or expectations with regard to autonomy in making healthcare decisions. Although many factors responsible for the desire for autonomy in medical decision-making are already recognized, little is known about how the desire for autonomy is related to values, which refer to important goals of human actions. The present study was designed to determine the relationship between the desire for autonomy and basic personal values (...) drawn on Schwartz’s value theory. We conducted survey in two age groups: younger and older adults. In the group of younger adults, the desire for autonomy was associated with the need to be appreciated as a person, motivation to act independently, and the abandonment of traditional order and values, whereas in the group of older adults, with independent thinking and a lack of humility. Our study highlighted that the desire for autonomy may result from slightly different reasons in people of particular age groups. These findings might be helpful for medical professionals in developing accurate communication patterns with different age groups of patients. (shrink)

In W v M and Others (Re M) the Court of Protection considered whether withdrawal of artificial nutrition and hydration was in the best interests of a person in minimally conscious state. The Mental Capacity Act 2005 states that in determining best interests the decision-maker must consider, so far as is reasonably ascertainable, the patient's wishes, feelings, beliefs and values. Baker J. indicated that a high level of specificity is required in order to attribute significant weight to these (...) factors. It is preservation of life which carries substantial weight in the best interests' balance sheet. Could the (prior) values of a patient ever meet the probative standard necessary to offset the weight accorded to preservation of life? Rather than referencing the patient's values to specific circumstances and treatments they could be more effectively considered as part of the patient narrative, how the patient would want her life story to continue/cease. (shrink)

An elderly patient in his early eighties is hospitalized in a long-term facility, with advanced Alzheimer disease. He is otherwise relatively strong and free from other life-threatening conditions, except for the fact that he has difficulties swallowing. After several episodes of acute aspiration pneumonia doctors prescribe “strict fast”: only hydration through an IV catheter should be administered during the night, in order to relieve the feeling of hunger, provide comfort, and stave off death. The patient is surrounded by (...) a warm and extremely close-knit Mediterranean family. His wife and six adult children take turns feeding him properly mixed food twice a day and prefer to take the risk of causing another... (shrink)

In the Journal of Medical Ethics, Joffe et al recently published an article titled “What do patients value in their hospital care? An empirical perspective on autonomy centred bioethics”.1 This empirical study evaluates whether patients’ willingness to recommend their hospital to others is more strongly associated with their belief that they were treated with respect and dignity than with their belief that they had an adequate say in their treatment.* Joffe et al go on to suggest that confirmation of these (...) empirical hypotheses would constitute a prescription for elevating the principle of respect for persons to the level that the principle of respect for autonomy currently enjoys in our model of the ideal patient–physician relationship .1 In other words, they suggest that by some means empirical findings could influence our ranking of the normative principles. Earlier in the article, they make an even stronger claim about the influence of empirical data on our acceptance of normative principles. They suggest that, if it were demonstrated empirically that some patients prefer to delegate medical decisions to health care professionals, a serious challenge would be levied against the normative assumptions underlying the principle of respect for autonomy, at least under the mandatory autonomy view, which holds that patients not only have a right but also an obligation to act autonomously .1 In the light of many recent empirical studies challenging the centrality of patient autonomy and shared decision making in bioethical theory, I think it is instructive to evaluate the means by which empirical findings, like those offered in Joffe et al, strengthen or weaken our arguments for ethical principles. In particular, I would be interested in how these authors propose that their data led them to the normative conclusions they reached.In the last …. (shrink)

Built-in decision thresholds for AI diagnostics are ethically problematic, as patients may differ in their attitudes about the risk of false-positive and false-negative results, which will require that clinicians assess patient values.

Objective: Contemporary ethical accounts of the patient-provider relationship emphasise respect for patient autonomy and shared decision making. We sought to examine the relative influence of involvement in decisions, confidence and trust in providers, and treatment with respect and dignity on patients’ evaluations of their hospital care.Design: Cross-sectional survey.Setting: Fifty one hospitals in Massachusetts.Participants: Stratified random sample of adults discharged from a medical, surgical, or maternity hospitalisation between January and March, 1998. Twelve thousand six hundred and eighty survey recipients (...) responded.Main outcome measure: Respondent would definitely be willing to recommend the hospital to family and friends.Results: In a logistic regression analysis, treatment with respect and dignity 3.4, 99% confidence interval 2.8 to 4.2) and confidence and trust in providers were more strongly associated with willingness to recommend than having enough involvement in decisions . Courtesy and availability of staff , continuity and transition , attention to physical comfort , and coordination of care were also significantly associated with willingness to recommend.Conclusions: Confidence and trust in providers and treatment with respect and dignity are more closely associated with patients’ overall evaluations of their hospitals than adequate involvement in decisions. These findings challenge a narrow emphasis on patient autonomy and shared decision making, while arguing for increased attention to trust and respect in ethical models of health care. (shrink)

The proposal of the new criteria for the diagnosis of Alzheimer’s disease based on biomarker data is making possible a diagnosis of AD at the mild cognitive impairment or predementia/prodromal– stage. Given the present lack of effective treatments for AD, the opportunity for the individuals to personally take relevant decisions and plan for their future before and if cognitive deterioration occurs is one the main advantages of an early diagnosis. Advance directives are largely seen as an effective tool for planning (...) medical care in the event the subject becomes incompetent. Nevertheless, their value has been questioned with regard to people with dementia by scholars who refer to the arguments of personal identity and of patient’s changing interests before and after the onset of dementia. In this paper, I discuss the value of advance directives in Alzheimer’s disease and other kind of dementia. Despite critics, I argue that advance directives are especially advisable in dementia and provide reasons in favor of their promotion at an early stage of the disease as a valuable tool to respect patients’ values and preferences on medical treatment, including participation in research and end of life decisions. I mainly support advance directives that include both decisions regarding health care and the appointment of an attorney in fact. I conclude that patients with AD at a prodromal or early stage should be offered the opportunity to execute an advance directive, and that not to honor a demented individual’s directive would be an unacceptable form of discrimination towards those patients. (shrink)

Incentivising has shown to improve participation in clinical trials. However, ethical concerns suggest that incentives may be coercive, obscure trial risks and encourage individuals to enrol in cli...

In response to increasing use of practice guidelines in medicine, physicians have focused their attention on how these guidelines can restrict their medical practices. However, guidelines not only restrict physician discretion, but they also limit the treatment options available to patients. As a result, treatments which patients consider beneficial may not be recommended; for example, some hysterectomies for abnormal uterine bleeding, and cataract surgery in patients with dementia. When guidelines are used to determine which medical treatments a health care organization (...) or insurer will cover, these recommendations become restrictions. Thus far, guidelines have been developed without adequate attention to the impact that their restrictive use has on diverse patient values.Two significant tensions in current medical ethics relate to the inclusion of patient values in practice guidelines. First, a tension exists between the traditional paternalistic model of care, in which the physician judges unilaterally which treatments will benefit the patient, and the more recent autonomy model, in which the physician elicits the individual patient's health values to determine which treatments will be beneficial. (shrink)

According to the principle of patient autonomy, patients have the right to be self-determining in decisions about their own medical care, which includes the right to refuse treatment. However, a treatment refusal may legitimately be overridden in cases where the decision is judged to be incompetent. It has recently been proposed that in assessments of competence, attention should be paid to the evaluative judgments that guide patients' treatment decisions.In this paper I examine this claim in light of theories of (...) practical rationality, focusing on the difficult case of an anorexic person who is judged to be competent and refuses treatment, thereby putting themselves at risk of serious harm. I argue that the standard criteria for competence assess whether a treatment decision satisfies the goals of practical decision-making, and that this same criterion can be applied to a patient's decision-guiding commitments. As a consequence I propose that a particular understanding of practical rationality offers a theoretical framework for justifying involuntary treatment in the anorexia case. (shrink)

This article is part of a wider study entitled Value of Nursing, and contains the literature search from electronic databases. Key words for the search included `values of nursing', `values in nursing', `organisational values' and `professional identity'. Thirty-two primary reports published in English between 2000 and 2006 were identified. The findings highlight the importance of understanding values and their relevance in nursing and how values are constructed. The value of nursing is seen to be influenced (...) by cultural change, globalization, and advancement in technology and medicine. These factors are crucial in providing a more structured and measured view of what nursing is, which will result in greater job satisfaction among nurses, better nurse retention and enhanced patient care within a supportive and harmonious organization. The findings of this review have implications for policy makers in recruitment and retention in determining the global value of nursing. (shrink)

What is the value of an early diagnosis of dementia in the absence of effective treatment? There has been a lively scholarly debate over this question, but until now patients have not played a large role in it. Our study supplements biomedical research into innovative diagnostics with an exlporation of its meanings and values according to patients. Based on seven focusgroups with patients and their care-givers, we conclude that stakeholders evaluate early diagnostics with respect to whether and how they (...) expect it to empower their capacity to care. They value it, for instance, with respect to whether it explains experienced complaints, allows to start a process of psychological acceptance and social adaptation to the expected degeneration, contributes to dealing with anxieties, informs adequately about when to start preparing for the end of life, informs the planning of a request for euthanasia, or allows society to deal with a growing amount of dementia patients. Our study suggests that information about disease is considered ‘harmful’ or ‘premature’ when recipients feel unable to act on that information in their care. The results of this research offers input to further ethical research. It invites to adopt a care perspective in evaluation and to seek ways to prevent the ‘harm’ that such diagnostic methods can bring about. (shrink)

The values of individuals who have never had the capacity to express their preferences are often overlooked or even ignored in the decision-making process. The case of “Michael,” a non-verbal young adult with a genetic condition and intellectual disability, is presented to challenge the traditional approach of relying solely on clinical indicators and the “best interest” standard narrowly construed in healthcare decision-making. Michael's interaction with his environment, gleaned through his family's input, illustrates that values and quality of life (...) can be discerned through observed behaviors and preferences, even in the absence of communicative ability. We argue for a broader definition of “values” that encompasses any aspect of life that brings meaning or enjoyment to the individual. This model not only personalizes care for never-capacitated individuals but may also be applied to other incapacitated populations, such as those with dementia, suggesting that past directives may not always align with their evolving values and interests. Underlying this expanded understanding of values in healthcare is a patient-centered approach that accounts for personal elements that contribute to an individual's sense of purpose and satisfaction. (shrink)

Very few attempts have been made to survey patient opinions, particularly regarding the use of residual biospecimens and health information in research, to clarify their values. We conducted a questionnaire survey that targeted outpatients of a university hospital to gauge their awareness levels and understand patient perspectives on research that uses these items. Few patients felt that obtaining individual consent for each research study was necessary. Most patients expressed the view that researchers should be obligated to inform (...) them about the research use of their items and be subject to self-directed rules. The research community should try to obtain “societal consent regarding an opt-out system” from the public. A salient value-sharing-based governance structure is necessary for obtaining public trust. (shrink)

Objective: The value of spontaneous EEG oscillations in distinguishing patients in vegetative and minimally conscious states was studied. Methods: We quantified dynamic repertoire of EEG oscillations in resting condition with closed eyes in patients in vegetative and minimally conscious states (VS and MCS). The exact composition of EEG oscillations was assessed by the probability-classification analysis of short-term EEG spectral patterns. Results: The probability of delta, theta and slow-alpha oscillations occurrence was smaller for patients in MCS than for VS. Additionally, only (...) patients in MCS demonstrated fast-alpha oscillation occurrence. Depending on the type and composition of EEG oscillations, the probability of their occurrence was either aetiology dependent or independent. The probability of EEG oscillations occurrence differentiated brain injuries with different aetiologies. Conclusions: Spontaneous EEG oscillations have a potential value in distinguishing patients in VS and MCS. Significance: This work may have implications for clinical care, rehabilitative programs and medical–legal decisions in patients with impaired consciousness states following coma due to acute brain injuries. (shrink)

Background Non-invasive prenatal testing (NIPT), which can screen for aneuploidies such as trisomy 21, is being implemented in several public healthcare systems across Europe. Comprehensive communication and information have been highlighted in the literature as important elements in supporting women’s reproductive decision-making and addressing relevant ethical concerns such as routinisation. Countries such as England and France are adopting broadly similar implementation models, offering NIPT for pregnancies with high aneuploidy probability. However, we do not have a deeper understanding of how professionals’ (...) counselling values and practices may differ between these contexts. Methods In this paper, we explore how professionals in England and France support patient decision-making in the provision of NIPT and critically compare professional practices and values. We draw on data from semi-structured interviews with healthcare professionals. Results Both English and French professionals emphasised values relating to patient choice and consent. However, understandings and application of these values into the practice of NIPT provision differed. English interviewees placed a stronger emphasis on interpreting and describing the process of counselling patients and clinical care through a “principle” lens. Their focus was on non-directiveness, standardisation, and the healthcare professional as “decision-facilitator” for patients. French interviewees described their approach through a “procedural” lens. Their focus was on formal consent, information, and the healthcare professional as “information-giver”. Both English and French professionals indicated that insufficient resources were a key barrier in effectively translating their values into practice. Conclusion Our findings illustrate that supporting patient choice in the provision of NIPT may be held as an important value in common on a surface level, but can be understood and translated into practice in different ways. Our findings can guide further research and beneficially inform practice and policy around NIPT provision. (shrink)

In 2018-2019, at the Keck School of Medicine of the University of Southern California, we developed and piloted a narrative-based health systems science intervention for patients living with HIV and medical students in which medical students co-wrote patients’ life narratives for inclusion in the electronic health record. The pilot study aimed to assess the acceptability of the “life narrative protocol” from multiple stakeholder positions and characterize participants’ experiences of the clinical and pedagogical implications of the LNP. Students were recruited from (...) KSOM. Patients and staff were recruited from the Maternal, Child, and Adolescent/Adult Center for Infectious Disease and Virology at Los Angeles County+USC Medical Center. Ten patients, seventeen students, and ten MCA staff participated in the pilot study. Qualitative methods were used to gather data from students’, patients’, and staff’s perspectives. Three themes emerged from the thematic analysis: patients’ life narratives conveyed their unique life experiences and voices; the protocol could result in wide-ranging effects on HIV care; the LNP enabled students to contribute value to patients’ healthcare. Across groups, participants considered the LNP an acceptable intervention. The LNP, its limitations, and implications for HIV care, narrative medicine, and health information technology are presented. (shrink)

The participation of vulnerable patients in clinical research poses apparent ethical dilemmas. Depending on the nature of the vulnerability, their participation may challenge the ethical principles of autonomy, non-maleficence, or justice. On the other hand, non-participation may preclude the building of a knowledge base that is a prerequisite for defining the optimal clinical management of vulnerable patients. Such clinical uncertainty may also incur substantial economic costs. We present the participation of pre-menopausal women with atrial fibrillation in trials of novel oral (...) anticoagulant drugs as a case study. Due to their non-participation in pivotal trials, it is uncertain whether for them, the risks that are associated with these drugs are outweighed by the advantages compared with conventional treatment. We addressed the question whether research of this new class of drugs in this subgroup would be appropriate from both, an ethical as well an economic perspective. We used the method of specifying norms as a wider framework to resolve the apparent ethical dilemma, while incorporating the question whether research of oral anticoagulants in premenopausal women with atrial fibrillation can be justified on economic grounds. For the latter, the results of a value-of-information analysis were used. Further clinical research on NOACs in premenopausal women with atrial fibrillation can be justified on both, ethical and economic grounds. Addressing apparent ethical dilemmas by invoking a method such as specifying norms can improve the quality of public practical reasoning. As such, the method should also prove valuable to committees that have formally been granted the authority to review trial protocols and proposals for scientific research. (shrink)

Background Patient-centeredness, respect for patient autonomy, and shared decision-making have now made it to center stage in discussions on quality of care. Knowing what actually counts in care and how it should be accomplished from the patients’ and nurses’ perspective seems crucial. Aim To explore how patients and their nurses perceive the importance and enactment of values in their healthcare. Research design An observational, cross-sectional study using a self-developed questionnaire, consisting of 15 items related to seven (...) class='Hi'>values (e.g. uniqueness, autonomy, professionalism, compassion, responsiveness, partnership, and empowerment) as described in the taxonomy of Bastemeijer et al. Participants and research context The survey was completed by 384 patients and 81 nurses. Participants were recruited on eight internal medicine wards of a 1000-bed university hospital in Belgium. Ethical considerations This study was approved by the ethical committee of the Ghent University Hospital (B670201836799). Findings (1) Patients and nurses prioritize values of care differently; (2) nurses report not being able to enact the values they prioritize in actual practice as much as one would like to; and (3) there is a gap in experienced delivery of a comprehensible explanation of all treatment options, a conversation based on equality, making shared decisions, and being non-judgmental between nurses and patients. Discussion Our findings challenge nurses’ overemphasis on professional compassion and uniqueness while arguing for increased attention on authentic shared decision-making and empowerment. The first step to a patient-centered culture truly involving patients in their healthcare is communication and information provision, rather than focusing on tangible and normative constructs. Conclusion Our findings revealed differences in prioritization and actual enactment of values in care between patients and nurses. This was especially so for values related to communication, provision of complete unbiased information, and shared decision-making. Nurses should prioritize providing comprehensible information and using conversations based on equality to make decision together with patients. (shrink)

Background: In the USA, the Food and Drug Administration waiver of informed consent permits certain emergency research only if community consultation occurs. However, uncertainty exists regarding how to define the community or their representatives.Objective: To collect data on the actual preferences and values of a group—those at risk for stroke—most directly affected by the waiver of informed consent for emergency research.Design: Face to face focused interviews were conducted with 12 patients who were hospitalised with a stroke diagnosis in the (...) previous year. The interviews were audiotaped and a transcript based method was used for their analysis.Results: All 12 participants felt “that it was important that new treatments for stroke be developed”, but they were initially confused about the distinction between “research for stroke” and “emergency research for stroke”. However, after explanation, most expressed willingness to participate in the latter. In the absence of a surrogate to give informed consent in a stroke emergency situation, the majority said they would want the physician to “go ahead and enrol them in the trial”.Conclusions: This study is the first to identify the values and concerns of individuals most directly affected by stroke emergency research. Further interviews and focus groups are needed to develop and test a validated questionnaire on the preferences and values surrounding emergency research for stroke. (shrink)

Artificial Intelligence and Machine Learning (AI/ML) models introduce unique considerations when determining their epistemic value. Fortunately, existing work on the epistemic features of AI/ML can...

The question of whether old age should or should not play a role in medical decision-making for the elderly patient is regularly debated in ethics and medicine. In this paper we investigate exactly how age influences the decision-making process. To explore the normative argumentation in the decisions regarding an elderly patient we make use of the argumentation model advanced by Toulmin. By expanding the model in order to identify normative components in the argumentation process it is possible to (...) analyse the way that age-related value judgements influence the medical decision-making process. We apply the model to practice descriptions made by medical students after they had attended consultations and meetings in medical practice during their clinical training. Our results show the pervasive character of age-related value judgements. They influence the physician’s decision in several ways and at several points in the decision-making process. Such explicit value judgements were not exclusively used for arguments against further diagnosis or treatment of older patients. We found no systematic “ageist” pattern in the clinical decisions by physicians. Since age plays such an important, yet hidden role in the medical decision-making process, we make a plea for revealing such normative argumentation in order to gain transparency and accountability in this process. An explicit deliberative approach will make the medical decision-making process more transparent and improve the physician–patient relationship, creating confidence and trust, which are at the heart of medical practice. (shrink)

The dominant approach to assessing decision-making capacity in medicine focuses on determining the extent to which individuals possess certain core cognitive abilities. Critics have argued that this model delivers the wrong verdict in certain cases where patient values that are the product of mental disorder or disordered affective states undermine decision-making without undermining cognition. I argue for a re-conceptualization of what it is to possess the capacity to make medical treatment decisions. It is, I argue, the ability to (...) track one’s own personal interests at least as well as most people can. Using this idea, I demonstrate that it is possible to craft a solution for the problem cases—one that neither alters existing criteria in dangerous ways (e.g. does not open the door to various kinds of abuse) nor violates the spirit of widely accepted ethical constraints on decision-making assessment. (shrink)

In this paper, we argue that promoting patient values is a legitimate goal of medicine. Our view offers a justification for certain current practices, including birth control and living organ donation, that are widely accepted but do not fit neatly within the most common extant accounts of the goals of medicine. Moreover, we argue that recognising value promotion as a goal of medicine will expand the scope of medical practice by including some procedures that are sometimes rejected as (...) being outside the scope of acceptable medical practice, such as certain forms of physician-assisted death. We then rebut some common and possible objections to this view. Our aim is not to argue that other accounts are mistaken—except when they argue for a single goal that does not include patient values—but rather to show that value promotion should play a more central role in discussions about the goals of medicine. (shrink)

Decisions related to births in the “gray zone” of periviability are particularly challenging. Despite published management guidelines, clinicians and families struggle to negotiate care management plans. Stakeholders must reconcile conflicting values in the context of evolving circumstances with a high degree of uncertainty within a short time period. Even skilled clinicians may struggle to guide the patient in making value–laden decisions without imposing their own values. Exploring the experiences of one pregnant woman and her caregivers, this case (...) study highlights how bias may undermine caregivers’ ability to meet their obligation to enhance patient autonomy and the moral distress they may experience when a patient’s values do not align with their own. Management strategies to mitigate the potential impact of bias and related moral distress are identified. The authors then describe one management strategy used in this case, facilitated ethics consultation, which is focused on thoughtful consideration of the patient’s perspective. (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...

In current American medical practice, autonomy is assumed to be more valuable than human life: if a patient autonomously refuses lifesaving treatment, the doctors are supposed to let him die. In this paper we discuss two values that might be at stake in such clinical contexts. Usually, we hear only of autonomy and best interests. However, here, autonomy is ambiguous between two concepts—concepts that are tied to different values and to different philosophical traditions. In some cases, the (...) two values (that of agency and that of authenticity) entail different outcomes. We argue that the comparative value of these values needs to be assessed. (shrink)

Dignity is a fundamental concept, but its meaning is not clear. This paper attempts to clarify the term by analysing and reconnecting two meanings of dignity: humanitas and dignitas. Humanitas refers to citizen values that protect individuals as equal to one another. Dignitas refers to aesthetic values embedded in genres of sociality that relate to differences between people. The paper explores these values by way of an empirical ethical analysis of practices of washing psychiatric patients in nursing (...) care. Nurses legitimate the washing of reluctant patients with reference to dignity. The analysis shows the intertwinement of humanitas and dignitas that gives dignity its fundamental meaning. (shrink)

Within the western health-care context autonomyis a central value. Still, as it is used withinthis context it is far from clear what we areactually talking about. In this article theauthor outlines four different uses or aspectsof autonomy: self-determination, freedom,desire-fulfilment and independence. Oneimportant conclusion will be that in order tobe able to respect autonomy in a way thatactually brings value to the patient’s life weneed to clearly assess what aspect of autonomythe patient values and for what reason it (...) isvalued by the patient. (shrink)

Aim: This study explores experiences of patients suffering from Korsakoff’s syndrome. It contributes to improved reflection on the value of patient knowledge. Background: An ethics of care perspective states the importance of moving to patients in their vulnerable state of being, and to figure out patients’ individual needs necessary to provide good care. The information given by patients suffering from Korsakoff’s syndrome might be mistaken, invented and even not true. The value of these patients’ experiences and knowledge had not (...) been researched to date. Method: Data from six in-depth interviews were analysed concurrently through the constant comparative method. Ethical considerations: The principles of voluntariness, confidentiality and anonymity were respected during the research process. Findings: Four important themes within patients’ knowledge emerged: health condition, involuntary admission into the nursing home, the daily routine and interpretation of the caring abilities of healthcare professionals. The findings show that our respondents were able to provide a window into their inner perspective. Conclusion: This study deepens our understanding of the value of patient knowledge in situations where patients see the world in a different manner as do healthcare professionals. The conversations revealed personal subjective knowledge which our respondents create and live by. Healthcare professionals are encouraged to discover and affirm the understandings of these patients, and not be prepossessed due to the diagnosis or general nursing home rules. Understanding patients’ unique knowledge through appreciation of the complexity and richness of different views on the situation can assist to give a more humane response to individual needs and pain. Health staff in healthcare institutions are encouraged to evaluate the – unintended – effect of rigidly applied nursing home rules, and the government is challenged to rethink its policy about care, and provide more resources permitting relational care that nurtures the dignity of patients suffering from Korsakoff’s syndrome. (shrink)

Patients' wishes regarding health care and dying must be taken into consideration by their physicians. Competent patients need to record directives about their care in advance of a crisis situation. The primary care physician, seeing the patient at the time of a routine office visit, is in a favorable position to explore and record attitudes. A patient's value system should be part of a medical history before hospital admission. Details in a Value History Questionnaire facilitate guiding an incompetent (...) patient through a terminal illness in accordance with wishes previously expressed.An instrument in the form of a questionnaire was designed to record the attitudes of 200 patients regarding health care and dying. Respondents ranged in age from 17 to 84 years, and all were members of one family practice. They reacted positively to the opportunity to record their values, opinions, and wishes about their health care and process of dying. They clearly indicated that, in the absence of prior directives, they would want their families consulted about crucial decisions. (shrink)

This paper advocates for the inclusion of patient perspectives in the diagnosis and treatment of eating disorders (EDs) for ethical, epistemological, and pragmatic reasons. We build upon the ideas of a recent editorial published in this journal. Using EDs as their example, the authors argue against dominant DSM-oriented approaches in favor of an increased focus on understanding patients’ subjective experiences. We argue that their analysis stops too soon for the development of practical—and actionable—insights into how to effect the integration (...) of first-person and third-person accounts of EDs. Methods Contextual analysis was used to make the case for patient perspectives. (shrink)

This articles assesses the arguments that bioethicists have presented for the view that patient’ autonomy has value over and beyond its instrumental value in promoting the patients’ wellbeing. It argues that this view should be rejected and concludes that patients’ autonomy should be taken to have only instrumental value in medicine.

Aim: Explore nurses’ values and perceptions regarding the practice of medical aid in dying. Background: Medical aid in dying is becoming increasing legal in the United States. The laws and American Nurses Association documents limit nursing involvement in this practice. Nurses’ values regarding this controversial topic are poorly understood. Methodology: Cross-sectional electronic survey design sent to nurse members of the American Nurses Association. Inductive thematic content analysis was applied to open-ended comments. Ethical Considerations: Approved by the institutional review (...) board (#191046). Participants: 1213 nurses provided 3639 open-ended comments. More than 80% of participants self-identified as white 58% held a graduate degree; and half were of Christian faith. Results: Values ranged on a continuum expressed through four themes: “Honoring Patient Autonomy without Judgment,” “Honoring with Limitations,” “Not until...,” and “Adamantly against.” Some felt it was a duty to honor the patients’ wishes, set aside own beliefs, and respect patients’ choices often with a spiritual connotation. Nurses held concerns about the process, policy, potential psychological harm, legal risk, and the need to learn more about MAID. Nurse who were adamantly against MAID associated the practice with murder/suicide and against religious beliefs. Disparate values were expressed about changing the MAID legislation to allow patient support with taking MAID medications and allowing MAID via advance directive. Conclusions: Nurses desire more education on MAID. There is not one universally held position on the nurse’s role during MAID. Healthcare policy/standards need to accommodate the wide variation in nurses’ values. Implications: Nurses desire education regarding their role in MAID. Nurses are encouraged to participate in policy discussions as the practice becomes increasingly legal. Managers need to expect that nurses, patients, and families will need psychological support to participate in MAID. Careful construction of policy/standards is needed to minimize conflict, moral distress, and psychological harm amongst nurses. Further research is needed. (shrink)

Evidence-based medicine has always required integration of patient values with ‘best’ clinical evidence. It is widely recognized that scientific practices and discoveries, including those of EBM, are value-laden. But to date, the science of EBM has focused primarily on methods for reducing bias in the evidence, while the role of values in the different aspects of the EBM process has been almost completely ignored.

Written by a leading proponent of the philosophy and ethics of healthcare, this volume, filled with thought-provoking and frequently controversial ideas and arguments provides readers with a contribution to the literature on medical ethics.

Values‐based practice is deemed essential for healthcare provision worldwide. In England, values‐based recruitment methods, such as multiple mini interviews (MMIs), are employed to ensure that healthcare students’ personal values align with the values of the National Health Service (NHS), which focus on compassion and patient‐centeredness. However, values cannot be seen as static constructs. They can be positively and negatively influenced by learning and socialisation. We have conceptualised students’ perceptions of their values over the (...) duration of their education programme as a ‘values journey’. The aim of this hermeneutic longitudinal focus group study was to explore the ‘values journey’ of student nurses and midwives, recruited through MMIs, across the 3 years of their education programme. The study commenced in 2016, with 42 nursing and midwifery students, originally recruited onto their programmes through multiple mini interviews. At the third and final point of data collection, 25 participants remained. Findings indicate that students' confidence, courage and sense of accountability increased over the 3 years. However, their values were also shaped by time constraints, emotional experiences and racial discrimination. We argue that adequate psychological support is necessary as healthcare students embark on and progress through their values journey, and propose a framework for this. (shrink)

Much of postmodern philosophy questions the assumptions of Modernity, that period in the history of the Western world since the Enlightment. These assumptions are that truth is discoverable through human reason; that certain knowledge is possible; and furthermore, that such knowledge will provide a basis for the ineluctable progress of Mankind. The Enlightenment project is underwritten by the conviction that knowledge gained through the scientific method is secure. In so far as biomedicine inherits these assumptions it becomes fair game for (...) postmodern deconstruction. Today, perhaps more than ever, plural values compete, and contradictory approaches to health, for instance, garner support and acquire supremacy through consumer choice and media manipulation rather than evidence-based science. Many doctors feel a tension between meeting the needs of the patient face to face, and working towards the broader health needs of the public at large. But if the very foundations of medical science are questioned, by patients, or by doctors themselves, wherein lies the value of their work? This paper examines the issues that the anti-foundationalist thrust of postmodernism raises, in the light of a case of mild hypertension. The strict application of medical protocol, derived from a nomothetic, statistical perspective, seems unlikely to furnish value in the treatment of an individual. The anything goes, consumerist approach, however, fares no better. The author argues that whilst value cannot depend on any rationally predetermined parameters, it can be rescued, and emerges from the process of the meeting with the patient. (shrink)

PurposeThe primary angle-closure glaucoma is an irreversible blinding eye disease in the world. Previous neuroimaging studies demonstrated that PACG patients were associated with cerebral changes. However, the effect of optic atrophy on local and remote brain functional connectivity in PACG patients remains unknown.Materials and MethodsIn total, 23 patients with PACG and 23 well-matched Health Controls were enrolled in our study and underwent resting-state functional magnetic resonance imaging scanning. The regional homogeneity method and functional connectivity method were used to evaluate the (...) local and remote brain functional connectivity. Moreover, support vector machine method was applied to constructing PACG classification model.ResultsCompared with the HC, PACG patients showed increased ReHo values in right cerebellum _8, left CER_4-5, and right CER_8. In contrast, PACG patients showed decreased ReHo values in the bilateral lingual gyrus /calcarine /superior occipital gyrus and right postcentral gyrus. The ReHo value exhibited an accuracy of 91.30% and area under curve of 0.95 for distinguishing the PACG patients from HC.ConclusionOur study demonstrated that the PACG patients showed abnormal ReHo value in the cerebellum, visual cortex, and supplementary motor area, which might be reflect the neurological mechanisms underlying vision loss and eye pain in PACG patients. Moreover, the ReHo values can be used as a useful biomarker for distinguishing the PACG patients from HCs. (shrink)