Patients increasingly share online health information with their physicians. However, few studies have investigated factors that may facilitate or inhibit such sharing and subsequent impact on physician-patient relationship. This study conducted a cross-sectional survey among 818 Chinese patients to examine if two patient characteristics -communication apprehension and eHealth literacy- influence their ways of sharing online health information with physicians and subsequently impact physician-patient relationship. The results showed that a majority of surveyed participants searched health information online, (...) and about half of them used such information during their doctor visits. Less apprehensive patients tend to share the information with their physicians more directly, which can positively affect perceived physician reactions and patient satisfaction. eHealth literacy, however, is not found to be associated with patients’ sharing of online information with physicians. This study underscores the importance of identifying patient characteristic’s role in patient-physician interaction. (shrink)

Next SectionPublic and healthcare professionals differ in their attitudes towards euthanasia and physician-assisted suicide (PAS), the legal status of which is currently in the spotlight in the UK. In addition to medical training and experience, religiosity, locus of control and patient characteristics (eg, patient age, pain levels, number of euthanasia requests) are known influencing factors. Previous research tends toward basic designs reporting on attitudes in the context of just one or two potentially influencing factors; we aimed to (...) test the comparative importance of a larger range of variables in a sample of nursing trainees and non-nursing controls. One hundred and fifty-one undergraduate students (early-stage nursing training, late-stage nursing training and non-nursing controls) were approached on a UK university campus and asked to complete a self-report questionnaire. Participants were of mixed gender and were on average 25.5 years old. No significant differences in attitude were found between nursing and non-nursing students. There was a significant positive correlation between higher religiosity and positive attitude toward euthanasia (r=0.19, p<0.05) and a significant negative relationship between internal locus of control and positive attitude toward PAS (r=−0.263, p<0.01). Multivariate analyses revealed differing predictor models for attitudes towards euthanasia and PAS, and confirm the importance of individual differences in determining these attitudes. The unexpected direction of association between religiosity and attitudes may reflect a broader cultural shift in attitudes since earlier research in this area. Furthermore, these findings suggest it possible that experience, more than training itself, may be a bigger influence on attitudinal differences in healthcare professionals. (shrink)

Recent legislation, such as the Patient Self-Determination Act, establishes advance directives as an acceptable procedural means of incorporating patients’ preferences for life-sustaining treatments into their medical care. Advance directives can enhance medical decision making since they provide patients with an opportunity to communicate their preferences before suffering from an acute illness that may preclude their ability to do so.Although patients expect discussions about life-sustaining therapies to be initiated by their physicians, very little is known about what prompts physicians to (...) discuss advance directives with their patients. As in other areas of clinical decision making, there is evidence that patients’ sociodemographic factors influence whether discussions about advance directives occur between patients and their physicians. In one study of persons with the acquired immunodeficiency syndrome, those who had not had discussions about advance directives with their physicians tended to be non-white, have no prior hospitalization, and were more likely to have been cared for in a health maintenance organization than in a teaching hospital. (shrink)

Objective: To investigate the differences between patients returning to work and those who did not after brain tumor surgery.Methods: Patients were evaluated before surgery and after 3 months. The Montreal Cognitive Assessment test, Trail-Making Test, 15-word Rey–Osterrieth Word List, F-A-S tests, and Karnosfky Performance Status were used to assess cognitive status, attention, executive functions, memory, word fluency, and functional status. Patient-reported outcome measures used to evaluate emotional distress and disability were the Hospital Anxiety and Depression Scale and World Health (...) Organization Disability Assessment Schedule. Clinical and work-related variables, PROMs, and cognitive tests were compared using chi-squared, t-test or Mann–Whitney U test.Results: Sixty patients were included. Patients returning to work were 61.3 and 31.0% among people with meningioma and glioma, respectively. They reported lower postoperative disability and lesser home-to-work travel time. Patients with meningioma also showed better preoperative and postoperative attention and executive functions, better postoperative functional and cognitive status, and lower frequency of treatments.Conclusions: These variables should be considered in a clinical context to plan interventions for people who need support during return to work and in future research to investigate preoperative and postoperative predictive factors of going back to work. (shrink)

BackgroundDespite consensus about the importance of implementing shared decision-making (SDM) in clinical practice, this ideal is inconsistently enacted today. Evidence shows that SDM practices differ in the degree of involvement of patients or family members, or in the amount of medical information disclosed to patients in order to “share” meaningfully in treatment decisions. Little is known on which representations and moral justifications physicians hold when realizing SDM. This study explored physicians’ experiences of SDM in the management of paediatric patients with (...) prolonged disorders of consciousness (PDOC). Specifically, we focused on physicians’ SDM approaches, representations, and ethical justifications for engaging in SDM.MethodsWe used a qualitative approach to explore the SDM experiences of 13 ICU physicians, paediatricians, and neurologists based in Switzerland who have been or were involved in the care of paediatric patients living with PDOC. A semi-structured interview format was used and interviews were audio-recorded and transcribed. Data were analysed through thematic analysis.ResultsWe found that participants followed three main decision-making approaches: the “brakes” approach, characterized by maximized family’s decisional freedom, though conditional to physician’s judgment regarding the medical appropriateness of a treatment; the “orchestra director” approach, characterized by a multi-step decision-making process led by the main physician aimed at eliciting the voices of the care team members and of the family; and the “sunbeams” approach, characterized by a process oriented to reach consensus with family members through dialogue, where the virtues of the physician are key to guide the process. We also found that participants differed in the moral justifications sustaining each approach, citing the duty to respect parental autonomy, to invest in an ethics of care, and to employ physicians’ virtues to guide the decision-making process.ConclusionOur results show that physicians come to perform SDM in different ways, with several representations, and distinct ethical justifications. SDM training among health care providers should clarify the ductility of SDM and the several ethical motivations underpinning it, rather than insisting on the principle of respect for patient’s autonomy as its only moral foundation. (shrink)

Objective Cluster randomised trial (CRT) investigators face challenges in seeking informed consent from individual patients (cluster members). This study examined associations between reporting of patient consent in healthcare CRTs and characteristics of these trials. Study design Consent practices and study characteristics were abstracted from a random sample of 160 CRTs performed in primary or hospital care settings that were published from 2000 to 2008. Multivariable logistic regression was used to examine associations between reporting of patient consent (...) and methodological characteristics, as well as publication features such as date and journal of publication. Results 82 (53.8%) of 160 studies reported obtaining informed consent from individual patients. Reporting of patient consent was independently and positively associated with: smaller cluster size, the evaluation of experimental interventions targeted at patients, data collection from individual patients, publication later than 2004 and publication in higher-impact journals. Conclusions Reporting of consent practices in published CRTs should be improved. Consent practices in published CRTs appear to be related to the type of interventions under study, as well as journal impact and trends in research ethics practices. These findings will inform best practices in trial conduct and ethics review, remediation of errors in consent practices and ethics review and the development of regulatory guidance for CRTs. (shrink)

This study investigated patient preferences for various types of physician persuasion strategies. Four types of persuasion strategies were utilized which involved combination of high and low levels of affectivity and information. In addition, patient variables, receiver apprehension and health beliefs were introduced to predict preference choices by patients. Results indicated that patients are influenced in their decision-making (preferences) by the type of persuasive strategy employed. Further, patients with different characteristics and predispositions prefer different persuasive strategies. The results (...) of this study suggest that the success of physician persuasiveness is dependent upon the type of strategy used and the type of patient being persuaded. (shrink)

This article discusses findings from a mixed method literature review that investigated cancer patients’ perceptions of what constitutes a good nurse. To find pertinent articles, we conducted a systematic key word search of five journal databases (1998—2008). The application of carefully constructed inclusion criteria and critical appraisal identified 12 relevant articles. According to the patients, good nurses were shown to be characterized by specific, but inter-related, attitudes, skills and knowledge; they engage in person-to-person relationships, respect the uniqueness of patients, and (...) provide support. Professional and trained skills as well as broad and specific nursing and non-nursing knowledge are important. The analysis revealed that these characteristics nurtured patient well-being, which manifests as optimism, trust, hope, support, confirmation, safety and comfort. Cancer patients’ perceptions of what constitutes a good nurse represent an important source of knowledge that will enable the development of more comprehensive and practice-based views on good nursing care for such patients. These perceptions help us to understand how nurses effectively make a difference in cancer patient care. (shrink)

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

As a science and practice of intervention and control, medicine is concerned with cure and care, the promotion and protection of health, and the prevention of maladies and human suffering. This wide-ranging task is accomplished through medical practice and medical research, though no sharp boundary between them can be drawn. A widespread misconception about medicine has it that medicine is concerned with illness and disease. However, the subject of medicine is the patient, i.e., Homo patiens, but not illness or (...) disease, with the ends being directed toward the relief, prevention of human suffering, and saving human life. Accordingly, medicine needs a theory of the patient first of all. Nosology and pathology as studies of illness and disease may be viewed as elements of such a theory of the Homo patiens. Seen from this perspective, clinical research and practice are to be based on the question: What is a patient? That is, what characteristics distinguish a patient from a non-patient? The present chapter is concerned with this question. The inquiry into what a patient, i.e., Homo patiens, is, intersects with anthropology that is concerned with the question of what is a human being? This is the fundamental philosophical question of medicine because, as an experimental and diagnostic-therapeutic discipline, it undertakes momentous interventions in human life. It therefore needs an image of the human being so as to ascertain whether medical interventions are in accord with, or contravene, that image. For example, it is a legitimate question to ask whether the transplantation of animal cells, tissues, and organs into humans, i.e., xenotransplantation, or whether the designing of offspring by genetic engineering, is morally permissible. Since anthropology is basically a philosophical endeavor, medicine at its foundations turns out to intersect with philosophy. We shall consider the patient as a bio-psycho-social agent who is suffering or whose life is threatened by some occurrences inside or outside of her body, usually called diseases, pathogenic environments, etc. Our aim is to understand what these occurrences may look like and how they may be conceptualized, systematized, recognized, causally analyzed, and controlled. Thus, our discussion consists of the following five sections: 7.1 The Suffering Individual; 7.2 The Bio-Psycho-Social Agent; 7.3 Health, Illness, and Disease; 7.4 Systems of Disease; 7.5 Etiology (= Science of Clinical Causation). (shrink)

Background: Despite a gradual shift in the focus of medical care among terminally ill patients to a palliative model, studies suggest that many children with life-limiting chronic illnesses continue to die in hospital after prolonged periods of inpatient admission and mechanical ventilation.Objectives: To examine the characteristics and location of death among hospitalised children, investigate yearwise trends in these characteristics and test the hypothesis that professional ethical guidance from the UK Royal College of Paediatrics and Child Health would lead (...) to significant changes in the characteristics of death among hospitalised children.Methods: Routine administrative data from one large tertiary-level UK children’s hospital was examined over a 7-year period for children aged 0–18 years. Demographic details, location of deaths, source of admission , length of stay and final diagnoses were studied. Statistical significance was tested by the Kruskal–Wallis analysis of ranks and median test , χ2 test and Cochran–Armitage test .Results: Of the 1127 deaths occurring in hospital over the 7-year period, the majority were among infants. The main diagnoses at death included congenital malformations , perinatal diseases , cardiovascular disorders and neoplasms . Most deaths occurred in an intensive care unit environment , with a significant increase over the years . There was a clear increase in the proportion of admissions from in-hospital among the ICU cohort . Infants with congenital malformations and perinatal conditions were more likely to die in an ICU , and older children with malignancy outside the ICU . Children stayed for a median of 13 days on a hospital ward before being admitted to an ICU where they died.Conclusions: A greater proportion of hospitalised children are dying in an ICU environment. Our experience indicates that professional ethical guidance by itself may be inadequate in reversing the trends observed in this study. (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)

Living with a chronic condition represents a strenuous experience that often could be lived as a sequence of waiting and crisis times. Therapeutic path incidents could represent however a catalysts and revelatory time, useful to patients to discover their own resources. A qualitative study according to the phenomenological hermeneutic perspective was conducted to understand the kind of skills expressed by the patients during a difficult episode, and the characteristics that identify patients who can overcome them better. From September 2019 (...) to August 2020 twenty-three patients followed-up in four Hospital Units of Northeastern of Italy were enrolled. All the patients described an episode linked whit their pathological condition; they mentioned mainly supportive, reactive, or behavioral strategies and an acceptance attitude. The sample characteristics may explain the recurring acceptance attitude; however, the younger individuals, those with a higher level of education and those who faced precedent negative life experiences seem to better overcome challenging events. It can’t be taken for granted that patients possess all the skills necessary to overcome the frequent challenging episodes they have to face; for this reason, healthcare professionals should assess their learning and reactive attitude in order to tailor for them therapeutic education paths. (shrink)

In this paper, an attempt is made to give patient autonomy added conceptual clarity. A concept of patient autonomy grounded in both negative and positive freedoms is defended. Amartya Sen's capabilities approach is used as a conceptual framework in which patient autonomy and fairness are defined compatibly. It is argued that in a socially fair healthcare system, everyone should have at least the degree of patient autonomy that affords access to those healthcare services necessary for survival (...) and a minimally adequate level of quality of life, consistent with each person's naturally endowed health characteristics. (shrink)

This paper examines the characteristics of infectious diseases that raise special medical and social ethical issues, and explores ways of integrating both current bioethical and classical public health ethics concerns. Many of the ethical issues raised by infectious diseases are related to these diseases’ powerful ability to engender fear in individuals and panic in populations. We address the association of some infectious diseases with high morbidity and mortality rates, the sense that infectious diseases are caused by invasion or attack (...) on humans by foreign micro‐organisms, the acute onset and rapid course of many infectious diseases, and, in particular, the communicability of infectious diseases. The individual fear and community panic associated with infectious diseases often leads to rapid, emotionally driven decision making about public health policies needed to protect the community that may be in conflict with current bioethical principles regarding the care of individual patients. The discussion includes recent examples where dialogue between public health practitioners and medical‐ethicists has helped resolve ethical issues that require us to consider the infected patient as both a victim with individual needs and rights and as a potential vector of disease that is of concern to the community. (shrink)

Patient decision-making autonomy refers to the patients’ ability to freely exert their own choices and make their own decisions, given sufficient resources and information to do so. In pain medicine, it is accepted that appropriate beneficial management aims to propose an individualized treatment plan shared with the patients, as agents, to help them live as autonomously as possible with their pain. However, are patients in chronic pain centers sufficiently autonomous to participate in the therapeutic decisions that concern them? As (...) this question still remains unanswered, a pilot study was set up to that aim. Over a 2-month period, first-time patients within a tertiary multidisciplinary pain center underwent a systematic evaluation of their autonomy using the MacArthur Competence Assessment Tool for Treatment (MacCAT-T), considered the benchmark tool for measuring a patient’s ability to consent to treatment. Demographic data and pain characteristics of the patients were collected and their respective attending pain physicians were asked to clinically assess their patients’ degree of autonomy. Another physician, who had not participated in the initial patient evaluation, subsequently administered the MacCAT-T questionnaire to the same patients. Twenty-seven patients were included during the study period (21 women and 6 men), with an average age of 50 years. The average duration of pain was 8 years. Based on their clinical experience, the 4 different pain physicians in charge of these patients considered that out of 25 assessed patients, 22 of them (89%) had full decision-making capacity, with no deficit in autonomy. According to the MacCAT-T results, only 13 of these 25 patients (48%) had no deficit, while 7 (26%) had a major deficit in autonomy. The only patient characteristic that appeared to be related to autonomy was pain type, specifically nociplastic pain. The average time taken to complete the test was 20 min, and patients were very satisfied with the interview. Results from the present pilot study suggest that patients suffering from chronic pain do not appear to be entirely autonomous in their decision to consent to the proposed treatment plan according to the MacCAT-T questionnaire, and physicians seem to find it difficult to properly assess this competence in a clinical setting. Further studies with larger samples are needed to better evaluate this concept to improve the complex management of these patients. (shrink)

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

The notion of patients’ duties has received periodic scholarly attention but remains overwhelmed by attention to the duties of healthcare professionals. In a previous paper the author argued that patients in publicly funded healthcare systems have a duty to participate in clinical research, arising from their debt to previous patients. Here the author proposes a greatly extended range of patients’ duties grounding their moral force distinctively in the interests of contemporary and future patients, since medical treatment offered to one (...) class='Hi'>patient is always liable to be an opportunity cost in terms of medical treatment needed by other patients. This generates both negative and positive duties. Ten duties—enjoining obligations ranging from participation in healthcare schemes to promoting one’s own earliest recovery from illness—are proposed. The characteristics of these duties, including their basis, moral force, extent and enforceability, are considered. They are tested against a range of objections—principled, societal, epistemological and practical—and found to survive. Finally, the paper suggests that these duties could be thought to reinforce a regrettably adversarial characteristic, shared with rights-based approaches, and that a preferable alternative might be sought through the notion of a “virtuous patient” contributing to a problem-solving partnership with the clinician. However, in defining and giving content to that partnership, there is a clear role for most, if not all, of the proposed duties; their value thus extends beyond the adversarial context in which they might first be thought to arise. (shrink)

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

Background: Discussing treatment risks has become increasingly important in medical communication. Still, despite regulations, physicians must decide how much and what kind of information to present. Objective: To investigate patients’ preference for information about a small risk of a complication of colonoscopy, and whether medical and personal factors contribute to such preference. To propose a disclosure policy related to our results. Design: Vignettes study. Setting: Department of Gastroenterology, Academic Medical Centre, the Netherlands. Patients: 810 consecutive colonoscopy patients. Intervention: A home-sent (...) questionnaire containing three vignettes. Vignettes varied in the indication for colonoscopy, complication severity and level of risk. Patients were invited to indicate their wish to be informed and the importance of such information. In addition, sociodemograhic, illness-related and psychological characteristics were assessed. Main outcome measurements: Wish to be informed and importance of information. Results: Of 810 questionnaires, 68% were returned. Patients generally wished to be informed about low-risk complications, regardless of the indication for colonoscopy or the severity of the complication. The level of risk did matter, though (OR = 2.48, SE = 0.28, p = 0.001). The information was considered less important if done for population screening purposes or diagnosis of colon cancer, if the complication was less severe (bleeding) and if the risk was smaller (0.01% and 0.1%). Patients’ information preference was also related to age, mood and coping style. Limitations: Difficulty of vignettes. Conclusions: Patients generally wish to be informed about all possible risks. However, this might become uninformative. A stepwise approach is suggested. (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)

Se efectuó un estudio en dos fases: una observacional descriptiva y otra correlacional, para caracterizar psicológicamente al niño y adolescente con Retinosis Pigmentaria y su familia, en el Centro Provincial que atiende a este paciente en la ciudad de Camagüey. El estudio se hizo aplicando una encuesta elaborada a los efectos del trabajo y una batería de pruebas psicológicas para niños y otra para adolescentes. Se realizó un muestreo intencional puro, no probabilístico de 41 pacientes. Las Pruebas Psicológicas aplicadas fueron: (...) Encuesta, Dibujo Libre, Rotter, Wechller Bellevue, Test Gráfico de la Familia para ambos grupos e Historietas de Madelaine Thomas, 3 Alegrías, 3 Roñas y 3 Miedos para niños y Técnica de los 10 Deseos, Inventario de Problemas Juveniles, Escala de Autovaloración de Dembo Rubinstein, para los adolescentes. A todas las madres de los pacientes se les aplicó el Cuestionario FFSIL para determinar su funcionamiento familiar. En lo metodológico, se realizaron modificaciones a las pruebas psicológicas, adaptándolas al entorno sociocultural cubano. Se reportaron hallazgos típicos explicables por el tipo de enfermedad. Como resultado de este estudio, se confirmó lo expuesto por otros autores que más que la enfermedad misma, lo que influye en su formación personológica es el proceso de socialización que se efectúe An study was made to characterize psychologically the childs and adolescent suffering from pigmentary retinosis and their family, in the Provincial Center that assists those patients in Camagüey. The study was carried out applying a battery of psychological tests for children and another for adolescents. The applied Psychological Tests were: interviews, Free Drawing, Rotter, Graphic Test of the Family for both groups and Comics of Madelaine Thomas, 3 Happiness, 3 Dirts and 3 Fears for children and Technique of the 10 Desires, Inventory of Juvenile Problems and the Scale of Dembo Rubinstein, for the adolescents. Methodological modifications to the psychological tests were carried out, adapting them to the Cuban sociocultural environment. Accountable typical discoveries were reported by the illness type. As results of this study, the most important fact for the patients' personalities is the socialization process. (shrink)

The aim of this study was to describe how patients’ participation in the care they received was documented in their health care records during the last three months of their lives. Two hundred and twenty-nine deceased adult persons were randomly identified from 12 municipalities in a Swedish county and their records were selected from different health care units. Content analysis was used to analyse the text. Four categories of patient participation were described: refusing offered care and treatments; appealing for (...) relief; desire for everyday life; and making personal decisions. The most common way for these patients to be involved in their care at the end of their life was by refusal of the treatment and care offered. Characteristic of the different ways of participation were the diverse activities represented. The description of patients’ involvement in their life situation at this time indicated their dissociation from the health care offered more than consenting to it. (shrink)

Background The significance of medical implants goes beyond technical functioning and reaches into everyday life, with consequences for individuals as well as society. Ethical aspects associated with the everyday use of implants are relevant for individuals’ lifeworlds and need to be considered in implant care and in the course of technical developments. Methods This scoping review aimed to provide a synthesis of the existing evidence regarding ethically relevant psychosocial and cultural aspects in cochlear, glaucoma and cardiovascular implants in patient-centered (...) empirical research. Systematic literature searches were conducted in EBSCOhost, Philpapers, PsycNET, Pubmed, Web of Science and BELIT databases. Eligible studies were articles in German or English language published since 2000 dealing with ethically relevant aspects of cochlear, glaucoma and passive cardiovascular implants based on empirical findings from the perspective of (prospective) implant-wearers and their significant others. Following a descriptive-analytical approach, a data extraction form was developed and relevant data were extracted accordingly. We combined a basic numerical analysis of study characteristics with a thematically organized narrative synthesis of the data. Results Sixty-nine studies were included in the present analysis. Fifty were in the field of cochlear implants, sixteen in the field of passive cardiovascular implants and three in the field of glaucoma implants. Implant-related aspects were mainly found in connection with autonomy, freedom, identity, participation and justice, whereas little to no data was found with regards to ethical principles of privacy, safety or sustainability. Conclusions Empirical research on ethical aspects of implant use in everyday life is highly relevant, but marked by ambiguity and unclarity in the operationalization of ethical terms and contextualization. A transparent orientation framework for the exploration and acknowledgment of ethical aspects in “lived experiences” may contribute to the improvement of individual care, healthcare programs and research quality in this area. Ethics-sensitive care requires creating awareness for cultural and identity-related issues, promoting health literacy to strengthen patient autonomy as well as adjusting healthcare programs accordingly. More consideration needs to be given to sustainability issues in implant development and care according to an approach of ethics-by-design. (shrink)

The image of “the good nurse” is mainly studied from the perspective of nurses, which often does not match the image held by patients. Therefore, a descriptive study was conducted to examine oncology patients’ perceptions of “the good nurse” and the influence of patient- and context-related variables. A cross-sectional, comparative, descriptive design was used. The sample comprised 557 oncology patients at one of six Flemish hospitals, where they were treated in an oncology day-care unit, oncology hospital ward, or palliative (...) care unit. Data were collected using the Flemish Care-Q instrument. Factor analysis summarised the most important characteristics of “the good nurse”. We reassessed the reliability and construct validity of the Flemish Care-Q and examined the influence of patient- and context-related variables on patient perceptions. Using factor analysis, we grouped the different items of the Flemish Care-Q according to three characteristics: “the good nurse” (I) has a supportive and communicative attitude towards patient and family, (II) is competent and employs a professional attitude, and (III) demonstrates personal involvement towards patient and family. Median factor scores of Factors I, II, and III, respectively, were 8.00, 9.00, and 8.00 (varying from 1, not important, to 10, very important). In order of importance, Factors II, I, and III were identified as valuable characteristics of “the good nurse”. Gender, care setting, and province were influential variables. As perceived by oncology patients, “the good nurse” has a broad range of qualities, of which competence and professionalism are the most valuable. (shrink)

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

Background Protecting a person’s right to privacy and confidentiality is important in healthcare services. As future health professionals, nursing students should bear the same responsibility as qualified health professionals in protecting patient privacy. Objectives To investigate nursing students’ practices of patient privacy protection and to identify factors associated with their practices. Research design A cross-sectional study design was adopted. A two-part survey was used to collect two types of data on nursing students: (1) personal characteristics, including demographics, (...) clinical experience and use of information and communication technology and social media and (2) practice of patient privacy protection, collected using the Patient Privacy Scale. Participants and research context: A total of 319 nursing students aged 18 or above, studying pre-registration nursing programmes and who had attended at least one block of clinical placement, were recruited from a university in Hong Kong. Ethical considerations The study received ethical approval from the Survey and Behavioural Research Ethics Committee of the Chinese University of Hong Kong. The participants were informed of the study aim and written consent was obtained before completing the survey. Findings: The mean total score on the Patient Privacy Scale was 119.7 out of 135. Nursing students who were regular users of Instagram and those who had never taken photographs with patients and hence did not need to obtain patient consent were associated with better practices of patient privacy protection (higher total scores on the Patient Privacy Scale). Conclusions The findings improve our understanding of nursing students’ practice of patient privacy protection and the associated factors. This will inform the development and revision of current strategies to enhance nursing students’ practice of patient privacy protection, especially their use of social media. (shrink)

The goal of this paper is to review and describe the characteristics and outcomes of ethics consultations on a gastrointestinal oncology service and to identify areas for systems improvement and staff education. This is a retrospective case series derived from a prospectively-maintained database of the ethics consultation service at Memorial Sloan Kettering Cancer Center. The study analyzed all ethics consultations requested for patients on the gastrointestinal medical oncology service from September 2007 to January 2016. A total of 64 patients (...) were identified. The most common primary ethical issue was the DNR order, followed by medical futility. The most common contextual issues were dispute/conflict between staff and family, dispute/conflict intra-family, and cultural/ethnic/religious issues. The majority of ethical issues leading to consultation were resolved ; i.e., the patient, surrogate, and/or healthcare team followed the recommendation of the ethics consultant. 22% had a DNR order prior to the ethics consult and 69% had a DNR order after the consult. In this population of patients on a gastrointestinal oncology service, ethics consultations are most often called regarding patients with advanced cancers and the most common ethical conflicts arose between families and the health care team over goals of care at the end of life, specifically related to the DNR order and perceived futility of continued/escalation of treatment. Ethics consultations assisted with conflict resolution. Conflicts might be reduced with improved communication about prognosis and earlier end of life care planning. (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)

Background: The developments in technology and communication channels, increasing workload, and carelessness cause problems regarding patient privacy and confidentiality in nursing services. Research objectives: The study was conducted to develop a patient privacy scale to identify whether nurses observe or violate patient privacy at workplace. Research design: This research was a methodological and descriptive study. Participants and research context: Participants were 354 nurses working at private hospitals and hospitals affiliated with the Ministry of Health in Istanbul/Turkey. Data (...) were collected with a questionnaire about the demographic characteristics of nurses and their opinions about patient privacy and with patient privacy scale. Ethical considerations: After getting permission from the top management of hospitals, information about the study was given to nurses. Those willing to participate were informed that participation was voluntary and invited to give written consent before data collection. Findings: The content validity index of scale was 0.91, Cronbach’s alpha was 0.93, Spearman–Brown and Guttman coefficients were 0.85, the upper and lower 27% test was −29.65, and item-total correlation values ranged from 0.47 to 0.71. The scale had five subscales. In addition, 49% of the nurses stated that patient privacy was always observed in their services/units. They appraised with a mean score of 4.51 ± 0.49 for the total scale, 4.39 ± 0.61 for confidentiality of personal information and private life, 4.39 ± 0.70 for sexual privacy, 4.56 ± 0.57 for the privacy of those unable to protect themselves, 4.60 ± 0.59 for physical privacy, and 4.60 ± 0.52 for ensuring a favorable environment. Discussion: The findings of this study were in contrast with the results of some international studies which determined the violation of the patient privacy. Conclusion: The patient privacy scale is a valid and reliable tool to collect data on whether nurses observe or violate patient privacy, and the nurses generally reported observing or paying attention to patient privacy in all hospitals and especially private hospitals. (shrink)

Dignity represents the essence of nursing care; hence, nurses are professionally responsible for promoting understanding about the promotion, provision, and preservation of every patient’s dignity, while considering contextual differences. The aim of this study was to explore the factors that influence, promote, or compromise patient dignity. A purposeful sample of 14 participants with hospitalization experience was chosen, and individual in-depth semi-structured interviews were conducted for data collection. Using inductive content analysis, the themes and subthemes related to factors influencing (...) patients’ dignity were explored: “persona” (“personal beliefs” and “personal characteristics”), “communication behaviors” (“verbal interaction,” “body language,” “compassionate behavior,” and “devoting enough time”), and “staff conduct” (“professional commitment,” “adequate human resources,” and “staff’s proficiency and competency”). The findings revealed that it is essential to expand nurses’ insights and knowledge about preserving patients’ dignity and the factors that influence these. Recognizing and focusing on these factors will help nurses to establish practical measures for preserving and promoting patients’ dignity and providing more dignified care at the bedside. (shrink)

Little is known about how certain patient characteristics can affect the timing of an ethics consultation, which has been hypothesized to affect patient length of stay. This study assessed how specific patient characteristics affect the timing of an ethics consultation, namely, age (over 65 years), race, Medicaid status, the presence of a living will, the presence of a health care proxy, and the absence of decisional capacity. Moving beyond the typical case-series evaluation of an ethics (...) consultation service, this study used an innovative approach to model how predisposing, enabling, and need factors affect health behavior and subsequently affect health outcomes for patients who received an ethics consultation at a Catholic health care system in Oklahoma. (shrink)

BackgroundDelirium is highly prevalent in the general hospital patient population, characterized by acute onset, fluctuating levels of consciousness, and global impairment of cognitive functioning. Mental capacity, its assessment and subsequent consent are therefore prominent within this cohort, yet under-explored.AimThis study of patients with delirium sought to determine the processes by which consent to medical treatment was attempted, how capacity was assessed, and any subsequent actions thereafter.MethodA retrospective documentation review of patients identified as having a delirium for the twelve months (...) February 2013 to January 2014 was undertaken. Inclusion and exclusion criteria were used; demographic and descriptive data collected. A total of n=1153 patients were identified with n=310 meeting inclusion criteria.ResultA random sample of one hundred patients were subsequently reviewed. One third of patients had documentation relating to consent, while four patients had documentation relating to capacity. Median delirium duration was three days, with treatment refusal occurring in twenty-two patients and “duty of care” being used as an apparent beneficent related treatment framework in twelve patients.ConclusionsWhile impaired decision-making was indicated, the review was unable to indicate what patient characteristics flag the need for capacity assessment. Documentation relating to consent processes appeared deficient for this cohort. (shrink)

BackgroundPatient skepticism concerning medical innovations can have major consequences for current public health and may threaten future progress, which greatly relies on clinical research.The primary objective of this study is to determine the variables associated with patient acceptation or refusal to participate in clinical research. Specifically, we sought to evaluate if distrust in pharmaceutical companies and associated psychosocial factors could represent a recruitment bias in clinical trials and thus threaten the applicability of their results.MethodsThis prospective, multicenter survey consisted in (...) the administration of a self-questionnaire to patients during a pulmonology consultation. The 1025 questionnaires distributed collected demographics, socio-professional and basic health literacy characteristics. Patients were asked to rank their level of trust for pharmaceutical companies and indicate their willingness to participate in different categories of research.Logistic regression was used to determine factors contributing to “trust” versus “distrust” group membership and willingness to participate in each category of research.ResultsOne thousand patients completed the survey, corresponding to a response rate of 97.5%. Data from 838 patients were analyzed in this study.48.3% of respondents declared that they trusted pharmaceutical companies, while 35.5% declared distrust. Being female, inactive in the employment market, and not-knowing the name of one’s disease are factors related to declared distrust. Distrust-group membership is associated with unwillingness to participate in certain categories of trials such as pre-marketing and industry-sponsored trials.ConclusionDistrust in pharmaceutical companies is associated with a specific patient profile and with refusal to participate in certain subcategories of trials. This potential recruitment bias may explain the under-representation of certain categories of patients such as women in pre-marketing drug trials. (shrink)

The standard approach to treatment decision making for incapacitated patients often fails to provide treatment consistent with the patient’s preferences and values and places significant stress on surrogate decision makers. These shortcomings provide compelling reason to search for methods to improve current practice. Shared decision making between surrogates and clinicians has important advantages, but it does not provide a way to determine patients’ treatment preferences. Hence, shared decision making leaves families with the stressful challenge of identifying the patient’s (...) preferred treatment option. To address this concern, the present paper proposes to incorporate the use of a “Patient Preference Predictor” (PPP) into the shared decision-making process between surrogates and clinicians. A PPP would predict which treatment option a given incapacitated patient would most likely prefer, based on the individual’s characteristics and information on what treatment preferences are correlated with these characteristics. Use of a PPP is likely to increase the chances that incapacitated patients are treated consistent with their preferences and values and might reduce the stress and burden on their surrogates. Including a PPP in the shared decision-making process therefore has the potential to realize important ethical goals for making treatment decisions for incapacitated patients. The present paper justifies this approach on conceptual and normative grounds. (shrink)

Background: Notwithstanding near-universal agreement on the theoretical importance of truthfulness, empirical research has documented gaps between ethical norms and physician behaviors. Although prior research has explored situations in which physicians may not be truthful with patients, it has focused on contexts within specialty practice. In this article, we report on a qualitative study of truthfulness in primary care. Methods: We conducted a qualitative study during December 2014–March 2015 involving both focus groups and in-depth, semistructured interviews with 32 primary care physicians (...) from the Boston, MA, and Baltimore, MD, metro areas in three specialties: internal medicine, family practice, and pediatrics. Interviews and focus groups were led using a semistructured guide, which explored situations in which primary care physicians find it difficult to be honest with patients; factors shaping truthfulness; and rationales for truthful and untruthful communication. Results: While physicians described outright lying to patients as rare, other deviations from truthfulness were not uncommon, including slanting and deliberately withholding information. Physicians described a range of factors as influencing truthfulness, from patient-level characteristics such as educational background to societal considerations including avoiding unnecessary tests and procedures. Physicians described truthfulness as an ethical requirement, deviations from which required further justification. Perceived justifications included promoting patient well-being and avoiding harm. Conclusions: Our results suggest a potential need to augment opportunities for training in “everyday ethics” challenges, such as the appropriateness of deception in response to patient requests for inappropriate tests or pain medications. Furthermore, they indicate that, in various circumstances encountered in primary care, physicians perceive other moral duties as potentially in conflict with the duty of truthfulness. Further ethical analysis should focus on identifying when deviations from complete truthfulness do and do not serve patients' interests, to guide physicians in striking a reasonable balance among principles of medical ethics that may conflict with one another. (shrink)

Abstract This article explores interview data from a study of 50 Norwegian generalist nurses' focus group accounts of caring for dying patients in the hospital and care home. An eclectic discourse analytic approach was applied to nurses' accounts of the patient and three discursive contexts of reference to the patient were identified: the 'taken as read' patient, the patient paired with particular characteristics and the patient as psychologically present. Talk about the patient falls (...) mainly into the first two contexts, which position the patient in relation to three closely related discursive processes: individualization, anonymization and objectification. The third context presents the patient as a person with a particular identity. The analysis is discussed in a broader philosophical and sociological context in which we return to some of the theoretical work on death and dying of the 1990s and the topic of sequestration. We suggest that nurses' talk about the patient can be heard to participate in a continuing sequestration of the dying patient in healthcare institutions focused on 'result-oriented' care. (shrink)

What characteristics or attributes of a healthcare decision qualify it as acceptable to those who are empowered to judge it as adequate and hence suitable to either proceed (or not) with a recommen...

Patient RP suffers a unilateral right homonymous quadrant anopia but demonstrates better than chance discrimination for stimuli presented in the blind field at temporal frequencies between 33 and 47 Hz . Examination of her reports of visual experience during blind-field discrimination suggests a more complex picture in which experiences particular to correct discrimination are not found at low-mid-gamma frequencies, but are significantly more likely than average at a lower frequency at which blindsight is not observed. We believe that visual (...) experience may serve to support blindsight if discrimination tasks are generally impaired at frequencies outside of the low-mid-gamma band. If this is so, although generally experienced as non-specific and unstructured light, the visual experience that accompanies discrimination performance must be based upon a neural representation which includes information on the visual features present in the stimulus. (shrink)

This study analyzed the national data on life-sustaining treatment decisions from 2018 to 2020 to find out the characteristics of South Korea’s end-of-life procedure according to the decision-making approach and process. We collected the data of 84,422 patients registered with the National Agency for Management of Life-sustaining Treatment. We divided the patients into four groups (G1, G2, G3, and G4) according to the decision-making approach. A descriptive analysis of each group was conducted using indicators such as the patient’s (...) age, status, diagnosis, and content of forgoing life-sustaining treatment. Additionally, logistic regression analysis was performed by dividing the patients into self-determining (G1, G2) and non-self-determining patients (G3, G4). Cancer was the most common diagnosis for each group. The period from life-sustaining treatment decision to implementation was 10.76, 1.01, 0.86, and 1.19 days for G1, G2, G3, and G4, respectively. In the logistic regression analysis, the self-determination ratio was higher for 40–49 years old and lower for cardiovascular disease and gastrointestinal disease. Age was has a major impact on life-sustaining treatment decisions (LSTD), and with increase in age, the family, and not the patient, made the LSTD. The LSTD method also differed depending on the disease. The self-determination rates of patients with circulatory or digestive diseases were somewhat lower than that of those with neoplastic diseases. The period from decision-making to implementation is short for end-of-life care. (shrink)