setting, are warranted. This article details a descriptive study in which patients were interviewed, during hospital stays, about their beliefs and understanding of advanced directions, as well as the processes used in completing them. The study was undertaken in a community hospital located in a rural area in the Midwest. Findings show that many patients were able to clearly articulate what an AD means in terms of making their choices known. However, misconceptions were found in patients' understanding of (...) ADs and only 46% reported discussing their ADs with a physician. Strategies for effective implementation of education programs related to ADs are detailed here. © 1999 Lippincott Williams & Wilkins, Inc.... (shrink)

Background Ethically, informed consent regarding randomised controlled trials (RCTs) should be understandable to patients. The patients can then give free consent or decline to participate in a RCT. Little is known about what patients really understand in consultations about RCTs. Methods Cancer patients who were asked to participate in a randomised trial were surveyed using a semi-standardised interview developed by the authors. The interview addresses understanding, satisfaction and needs of the patients. The sample included eight patients who participated in (...) a trial and two who declined. The data were analysed on the basis of Mayring's qualitative analysis. Results Patients' understanding of informed consent was less developed than anticipated, especially concerning key elements such as randomisation, content and procedure of RCTs. Analysing the result about satisfaction of the patients, most of the patients described their consultations as hectic and without advance notice. Health limitations due to cancer played a decisive role. However, most of the patients perceived their physician to be sympathetic. Analysing the needs of patients, they ask for a clear informed consent consultation with enough time and adequate advance notice. Conclusion This study fills an important empirical research gap of what is ethically demanded in an RCT consultation and what is really understood by patients. The qualitative approach enabled us to obtain new results about cancer patients' understanding of informed consent, to clarify patients' needs and to develop new ideas to optimise the informed consent. (shrink)

While several tests and strategies are recommended for colorectal cancer (CRC) screening, studies suggest that primary care providers often recommend colonoscopy without providing information about its risks or alternatives. These observations raise concerns about the quality of informed consent for screening colonoscopy.

Efforts to improve patients’ understanding of their own medical treatments or research in which they are involved are progressing, especially with regard to informed consent procedures. We aimed to design a multisource informed consent procedure that is easily adaptable to both clinical and research applications, and to evaluate its effectiveness in terms of understanding and awareness, even in less educated patients.

Participants in clinical research sometimes view participation as therapy or exaggerate potential benefits, especially in phase I or phase II trials. We conducted this study to discover what methods might improve cancer patients’ understanding of early-phase clinical trials. We randomly assigned 130 cancer patients from three U.S. medical centers who were considering enrollment in a phase I or phase II cancer trial to receive either a multimedia intervention or a National Cancer Institute pamphlet explaining the trial and its purpose. (...) Intervention participants were 32 times more likely to believe that the trial’s purpose was to examine safety and 60 % less likely to believe they would experience long-term benefit or cure. There was no difference in enrollment decision. However, while patients’ understanding of the trial’s purpose improved and expectations of long-term benefit diminished, half the respondents still believed they would experience long-term benefit or cure from participation. Therefore, we conclude that multimedia interventions such as this one may help oncologists to explain the risks and benefits of early-phase cancer trials in a way that patients can more easily understand, helping them to make more informed decisions about participation. But further research into other factors that influence patients’ beliefs about the outcome of enrollment is needed, both to modify the interventions and to determine how malleable patient beliefs are. (shrink)

Some experts have argued that patients should routinely be told the specific magnitude and absolute probability of potential risks and benefits of screening tests. This position is motivated by the idea that framing risk information in ways that are less precise violates the ethical principle of respect for autonomy and its application in informed consent or shared decisionmaking. In this Perspective, we consider a number of problems with this view that have not been adequately addressed. The most important challenges stem (...) from the danger that patients will misunderstand the information or have irrational responses to it. Any initiative in this area should take such factors into account and should consider carefully how to apply the ethical principles of respect for autonomy and beneficence. (shrink)

Informed consent may be seriously compromised if patients fail to understand the experimental nature of the trial in which they are participating. Using focus groups, the authors explored how prospective trial participants interpret and understand the science of clinical trials by using patient information sheets relative to their medical condition. An opportunity was provided to hear in the patients’ own words how they interpret the information and why there is variable understanding. Respondents struggled to comprehend the meaning and (...) purpose of concepts such as randomisation and double blinding, and found them threatening to their ideas of medical care. Suggestions are made about how to improve the national guidelines on written information for trial participants and pretesting of the information sheets is advocated. (shrink)

The latest book is a timely application of the Pragma-Dialectical argumentative approach to medical consultation. The book consists of six chapters, which are concerned with topics pertaining to resolving differences of the opinion in doctor-patient interaction. With the publication of the book, the authors have made new contributions to the field of doctor-patient argumentative discourse.

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

Pragmatic presupposition is analyzed in this paper as grounded on an implicit reasoning process based on a set of presumptions, which can define cultural differences. The basic condition for making a presupposition can be represented as a reasoning criterion, namely reasonableness. Presuppositions, on this view, need to be reasonable, namely as the conclusion of an underlying presumptive reasoning that does not or may not contain contradictions with other presumptions, including the ordering of the hierarchy of presumptions. Presumptions are in turn (...) analyzed considering their nature and their hierarchy, namely their object and their possible contextual backing, which eliminates some of their possible defaults. This analysis of presupposition brings to light the relationship between communicative infelicities or misunderstandings deriving from presuppositional failures and the underlying system of presumptions and presumptive reasoning. This approach can be applied to the investigation of communicative problems within the medical context, and more precisely the communication in diabetes cases. (shrink)

Objective: We hypothesized that the reasons behind this tension are complex and can be understood better by applying social psychology theory.Design: A qualitative methodology was drawn on for data collection and thematic analysis, with focus group discussions adopted for interviews with patient families and ICU physicians. Additionally, we used a social psychology theory, the reasoned action approach (RAA) framework, to understand these tensions.Setting: Two 15-bedded ICUs of an academic university–affiliated teaching hospital in Singapore.Subjects: A total of 72 physicians and (...) family members of older ICU patients (>70 years old).Measurements and Main Results: The primary analysis revealed five areas of tension around prognostication in the ICU. These dealt with issues of divergent views, different role expectations, conflicting emotional responses, and issues of communication and trust. Further analysis helped to identify underlying factors leading to tensions and behaviors. Differences in prognostication and in expectation of outcomes between clinicians and family members were the main cause of tensions. When the RAA framework was applied, these tensions could be predicted early on and understood more clearly.Conclusions: Tensions revolve around losing control of the patient’s care, differences between hopeful expectations and clinical prognostication, perceived biases of physicians, and underlying mistrust between families and physicians. (shrink)

Understanding each patient's situation or lived experience evolves from a nurse's sincere communication with the patient. Through rhetoric, the nurse's use of competent language and expressions is more likely to engage the patient in a dialogical discussion that brings forth an open, honest display of feelings and emotions. Through hermeneutics, the nurse gains an accurate understanding and interpretation of a patient's beliefs, values, and situations that supports explanations of meaning. Thus, with rhetoric being the (...) words or expressions that give rise to hermeneutics or the interpretation, the blending of the two creates a rhetorical–hermeneutical relationship that provides accurate understanding of a patient's true lived experience. Consequently, knowing the patient depends upon the nurse's rhetorical competence and accurate assessment of each patient's authentic self. Nurses should seek to interpret and understand the lived experiences of patients in order to limit or prevent misunderstandings and inaccuracies in communication. The truth that emerges from the expressed rhetorical–hermeneutical interrelationship will enhance nurses’ sensitivity to patient matters, produce relationship outcomes that emerge from a consistent and effectively applied set of interpersonal principles, and more importantly, successfully influence nurses’ lives and those of their patients with meaning that ultimately improves the human condition. Thus, nurses’ communication and perceptive understanding of each patient's world or lived experience becomes an integral and necessary component to effectively carrying out the practice role of caregiving. (shrink)

The American Journal of Bioethics, Volume 12, Issue 5, Page 15-16, May 2012.

Aims: To assess patient receipt of written information. To ensure patients understand the written information about a resuscitation policy and to determine whether they disapproved of or had concerns about the policy. Methods: All admissions to four wards of the hospital were approached for an interview. A set questionnaire was asked by one of 2 interviewers. Results: 72% of 572 admissions were interviewed. Refusal accounted for only 2 of the people not interviewed. 11% were unable to advocate for themselves (...) by reason of mental incompetence, inability to communicate or impairment secondary to their illness. Of the 401 interviewed only 49% recalled receiving the patient information booklet. Few patients (17%) recalled reading the information in the patient information booklet. They were all then given the paragraph about the hospital’s resuscitation policy. 352 were asked their understanding and only 61% demonstrated that they understood the paragraph. 91% of all 401 patients approved of the hospital having the option of DNR orders. 31% of people however had concerns related to DNR orders. These are discussed. Conclusions: Many acutely unwell patients are unable to advocate for themselves. Written information is a poor method of communicating with patients. There was limited receipt of the information and many misunderstood the paragraph about the hospitals resuscitation policy. There was a wide range of patient thoughts and concerns expressed. (shrink)

Understanding between care providers and patients with stroke and aphasia: a phenomenological hermeneutic inquiry The present study illuminates the understanding in communication between formal care providers and patients with stroke and aphasia. Five care providers and three such patients participated in the study. Video recordings were made during conversations about pictures (n = 15), and the care providers were also interviewed (n = 15) after the video‐recorded conversations. A phenomenological hermeneutic method of interpretation of the interview text was (...) used. The findings showed that a range of conditions for ‘understanding and being understood’ in the communication on the part of the care providers exists. These different conditions are: lacking both knowledge and understanding; having knowledge but not necessarily accompanied by understanding; and being in understanding. Within the condition ‘being in understanding’, the care providers create a feeling of at‐homeness in a relaxed atmosphere and thus have the opportunity to be in ‘understanding and being understood’ together with the patient. The condition ‘being in understanding’ appears in connection with the care providers’ creating of a ‘calm liturgy of caring’ by mediating humility and calm vitality affects to the patients, and further, when needed, being present on the level of mystery, i.e. caring communion. (shrink)

Background Older patients are often vulnerable and highly dependent on healthcare professionals’ assessment in the event of acute illness. In the context of ambulance services, this poses challenges as the assessment is normally conducted with a focus on identifying life-threatening conditions. Such assessment is not fully satisfactory in a patient relationship that also aims to promote and protect patient autonomy. Aim To describe ambulance clinicians’ understanding of older patients’ self-determination when the patient’s decision-making ability is impaired. (...) Research design A qualitative design with an inductive approach, guided by descriptive phenomenology. Participants In total, 30 ambulance clinicians, comprised of 25 prehospital emergency nurses, 1 nurse and 4 emergency medical technicians participated in 15 dyadic interviews. Ethical considerations The research was conducted in accordance with the Declaration of Helsinki, and permission was granted by the Swedish Ethical Review Authority. Findings The findings are presented in two themes: (1) Movement between explicit and implicit will; and (2) Contradictions about the patient’s best interests. The clinicians’ interpretations are based on an understanding of the patient’s situation using substitute decision-making in emergency situations and conversations that reveal the patient’s explicit wishes. Sometimes the clinicians collaborate to validate the patient’s implicit will, while they at other times subordinate themselves to others’ opinions. The clinicians find themselves in conflict between personal values and organisational values as they try to protect the patient’s self-determination. Conclusion The results indicate that older patients with an impaired decision-making ability risk losing the right to self-determination in the context of ambulance services. The clinicians face challenges that significantly affect their ability to handle the older patient’s unique needs based on a holistic perspective and their ability to be autonomous. (shrink)

High-quality doctor-patient communication in end-of-life care results in better quality of life for patients. In linguistically and culturally diverse societies, language discordant consultations become daily practice, leading to difficulties in eliciting patient preferences toward end-of-life care. Although family members invariably act as informal interpreters, this may cause some ethical dilemmas. We present a case of a palliative patient whose son acted as an interpreter. This case generated a triple- layered ethical dilemma: how to safeguard patient autonomy (...) against paternalistic interventions by family members, how to respect the relational context in which patient autonomy can be realized, and how to respect the ethno-cultural values of the patient and his family. These issues are being discussed and reflected upon within the framework shared decision making involving informal- and professional interpreters. The complementary use of professional interpreters next to family members acting as informal interpreters is recommended. (shrink)

Disease-related challenges are often associated with perceived uncertainties in individuals, triggering attempts to cope with the situation. Our study aims to understand patients’ coping strategies regarding health information-seeking behaviors (HISBs). It is guided by the Uncertainty Management Theory, and seeks to grant insights into multi-channel HISB by describing how uses of interpersonal and media channels interact to cope with uncertainties, and how trust influences the process of multi-channel HISB. Patients diagnosed with osteoarthrosis (N = 34) participated in qualitative semi-structured interviews, (...) from which five patterns of multi-channel HISB, ranging from a focus on the physician to a focus on the internet, were identified. These patterns are distinguished by underlying functions of trust – including trust serving as an additional coping strategy, and as an important influencing factor for perceiving information as meaningful – and by whether information needs remain and patients turn to multiple sources. These findings form the basis for further theory development considering the iterative nature of HISB and the role of trust. (shrink)

The aim of this paper is to enhance doctors’ awareness of implicit understandings between doctors and patients in the context of pre-operative communication of risks. This paper draws on insights from the philosophy of language – in particular pragmatic analysis tools – that make explicit the implicit understandings of the interaction. Mastering not only _what is said_ but also _what is unsaid_ allows doctors to improve their communication with their patients. I suggest that being aware of the implications of the (...) interactions is useful for improving both the doctor’s and the patient’s experience, further strengthening the therapeutic alliance. In this article I analyze actual cases involving pre-operative evaluation before cardiac surgery from a philosophy of language perspective. The paper is structured as follows: a description of the relevant philosophy of language tools that I will apply; an overview of the risk-communication context; an explanation of the link between “the implicit dimension” and trust, addressing whether the doctor needs to convey the whole truth; and the analysis of real cases. In conclusion, I re-emphasize the importance of implicit meanings during risk communication. (shrink)

Abstract:James Groves opens his 1978 foundational article, "Taking Care of the Hateful Patient," thusly, "Admitted or not, the fact remains that a few patients kindle aversion, fear, despair, or even downright malice in their doctors." Groves understood his article as pulling back the curtain on an experience that physicians had but that few dared discuss without shame. His taxonomy of four types of "hateful" patients: clingers, entitled demanders, manipulative help rejectors, and self-destructive deniers may still be instructive. However, the (...) intervening years have revealed that this taxonomy does not adequately capture the nuances present when patients are described as "difficult." This issue of Narrative Inquiry in Bioethics situates this complexity. Different kinds of providers in a variety of healthcare delivering institutions have offered accounts of their own interactions with so-called difficult patients. In each of these stories, the providers tell the reader how the providers were transformed through these interactions: what they learned about their patients, what they learned about patient care, what they could have done differently or better, and what lessons they have taken with them into subsequent encounters. (shrink)

Given the moral pluralism that characterizes Western democratic societies and their health professions, it should be expected that there will be ethical differences among citizens and health professionals, due to contrasts between the foundational beliefs and values on which their ethical convictions rest. It should also be expected that some of these differences will have practical implications for the way professionals are willing to practice, and the way patients are willing to receive, health care. These practical implications include our responses (...) to ethically controversial practices and the ways in which we maintain or compromise our individual integrity, that quality of the moral life that refers to... (shrink)

Questions assumptions about what it is to be a human being by examining the ideas of thinkers such as Foucault, Winnicott, Lacan and Jaspers. Chessick combines succinct summaries of the writings of these European thinkers with critical commentaries.

Ford, Norman In 1972 Brian Jennett and Fred Plum recommended the term 'persistent vegetative state' to describe a state of continuing 'wakefulness without awareness', which can follow a variety of severe insults to the brain. Their description of the syndrome has stood the test of time, but PVS continues to be a source of medical, legal, and ethical debate.

“Ethics” is used as a label for a new kind of expertise in the field of science and technology. At the same time, it is not clear what ethical expertise consists in and what its political status in modern democracies can be. Starting from the “participatory turn” in recent social research and policy, we will argue that bioethical reasoning has to include public views of and attitudes towards biomedicine. We will sketch the outlines of a bioethical conception of “public (...) class='Hi'>understanding of ethics,” addressing three different issues: the methodological relevance of moral questions and problems raised by lay persons in everyday life regarding biomedicine and technology, the normative relevance of such lay moralities for the justification of ethical decisions, and the necessity of public deliberation in this context. Finally, we draw conclusions in view of the concepts and methods such a conception of “public understanding of ethics” should employ. (shrink)

In recent years the literature on bioethics has begun to pose the sociological challenge of how to explore organisational processes that facilitate a systemic response to ethical concerns. The present discussion seeks to make a contribution to this important new direction in ethical research by presenting findings from an Australian pilot study. The research was initiated by the Clinical Ethics Committee of Redland Hospital at Bayside Health Service District in Queensland, Australia, and explores health professionals’ understanding of the nature (...) of ethics and their experience with ethical decision-making within an acute medical ward. This study focuses on the actual experience, understanding and attitudes of clinical professionals in a general medical ward. In particular, the discussion explores the specific findings from the study concerned with how a multi-disciplinary team of health professionals define and operationalise the notion of ethics in an acute ward hospital setting. The key issue reported is that health professionals are not only able to clearly articulate notions of ethics, but that the notions expressed by a multi-disciplinary diversity of participants share a common definitional concept of ethics as patient-centred care. The central finding is that all professional groups indicated that there is a guiding principle to address their ethical sense of the ‘good’ or the ‘ought’ and that is to act in a way that furthered the interests of patients and their families. The findings affirm the importance of a sociological perspective as a productive new direction in bioethical research. (shrink)

The work of Sankary et al. (2022) provides valuable insights into the experiences of participants exiting brain device research. Empirical bioethics research such as this is critical to understandi...

Although respect and human presence are frequently reported in nursing literature, these are poorly defined within a nursing context. The aim of this study was to examine the differences, if any, in the perceived frequency of respect and human presence in the clinical care, between nurses and patients. A convenience sample of 1537 patients and 1148 nurses from six European countries (Cyprus, Czech Republic, Finland, Greece, Hungary and Italy) participated in this study during autumn 2009. The six-point Likert-type Caring Behaviours (...) Inventory-24 questionnaire was used for gathering appropriate data. The findings showed statistically significant differences of nurses’ and patients’ perception of frequency on respect and human presence. These findings provide a better understanding of caring behaviours that convey respect and assurance of human presence to persons behind the patients and may contribute to close gaps in knowledge regarding patients’ expectations. (shrink)

Respect for autonomy is a key concept in contemporary bioethics and in ethics at the end of life in particular. An individualistic interpretation of autonomy may not incorporate the aspects of consideration that patients may have for their wider construct of personhood, which includes their love and consideration for their families. This anonymous case describes the intricacies of a patient’s decision making at the end of life, the choices she made, and how her decisions changed as her situation evolved. (...) The tension this produced within the medical team is unpacked using a lens of compassionate care in the intensive care unit. (shrink)

McNaught, Keith; Shaw, Geoffrey Organisations ubiquitously seek feedback from their customers, for a vast range of reasons. The data may assist in improving services, responding to concerns, celebrating excellent service, or determining that desired standards are being achieved. Australian hospitals utilise a range of techniques to collect patient feedback, and to use that patient feedback as part of continuous improvement. Whilst every hospital in Australia is expected to provide excellent medical care and treatment, private hospitals regularly purport to (...) offer some form of 'distinctive care', and options for patients that do not usually exist in public hospitals. Most often, private hospital patients are contributors to private health insurance, which is expensive, and additional 'out of pocket' expenses are the norm. Patients, therefore, often have particular expectations of a private hospital, which may include their choice of doctor, surgeon or anaesthetist; a private room and ensuite bathroom; a high standard of food choices; being kept well-informed with regard to their treatment; flexible hours and arrangements for visitors; a longer stay; and personalised care. (shrink)

A fundamental aim in caring practice is to understand patients' experiences of ill‐health. These experiences have a qualitative content and cannot, unlike thoughts and beliefs with conceptual content, directly be expressed in words. Nurses therefore face a variety of interpretive challenges when they aim to understand patients' subjective perspectives on disease and illness. The article argues that theories on social simulation can shed light on how nurses manage to meet these challenges. The core assumption of social simulationism is that we (...) do not understand other people by forming mental representations of how they think, but by putting ourselves in their situation in a more imaginative way. According to simulationism, any attempt to understand a patient's behavior is made on the basis of simulating what it is like to be that patient in the given context. The article argues that this approach to social interpretation can clarify how nurses manage to achieve aims of patient understanding, even when they have limited time to communicate and incomplete knowledge of patients' perspectives. Furthermore, simulation theory provides a normative framework for interpretation, in the sense that its theoretical assumptions constitute ideals for how nurses should seek to understand patients' experiences of illness. (shrink)

In this article, I argue that various epistemic challenges associated with eating disorders (EDs) can negatively affect the care of already marginalized patient groups with various EDs. I will first outline deficiencies in our understanding of EDs—in research, healthcare settings, and beyond. I will then illustrate with examples cases where discriminatory misconceptions about what EDs are, the presentation and treatment of EDs, and who gets EDs, instantiate obstacles for the treatment of various ED patient groups.