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Rethinking Autonomy and Consent in Healthcare Ethics
... Suboptimally or intimidating relationships between physicians and nursing personnel can bring about a situation that may have a devastating impact on patients. A healthy work environment that promotes patient safety requires good communication and collaboration between physicians and nurses [31,32]. ...
... ' This is not surprising, provided that contextualized relationships and trust are core elements of healthcare. This is emphasized by Milligan and Jones, who state that 'dialogue and communication lie at the ethical core of human interactions in healthcare' [31]. These elements are essential for improving the quality of healthcare services. ...
Background
Conscientious objection in nursing has been a topic of much discussion in recent years. Healthcare providers’ conscientious objection has been included in Greek legislation. However, little is known about the real experiences of nurses who want to apply conscientious objections in their practice. This study aimed to contribute to filling that gap.
Methods
This qualitative study was conducted with eighteen experienced female nurses. Data were collected through semi-structured in-depth qualitative interviews conducted with purposively selected nurses during the period from October 2019 to January 2020. Interviews were transcribed verbatim and analysed thematically. The ethical principles of anonymity, voluntary participation and confidentiality were considered.
Results
Eight major themes and seven subthemes emerged from the thematic data analysis. Oppressive behaviors in the workplace and subservient interactions between nurses and physicians, suboptimal communication and inadequate support of nurses, perceived ineffectiveness of nurses’ conscientious objections, missing legal protection against job insecurity, provision of care labeled ‘futile’, nurses’ false knowledge and perceptions on medical situations related to conscientious objections, nurses’ fears of isolation bullying and negative gossip in the workplace and a trivial amount of nurses’ involvement in medical decisions emerged as barriers to nurses raising conscientious objection. Furthermore, from data analysis, it emerged that some nurses had false knowledge and perceptions on medical situations related to conscientious objections, some nurses experienced mild uncertainty distress about their ethical concerns, nurses considered their remote contribution as participation that can give rise to conscientious objection, a collective conscientious objection raised by nurses might have increased chances of being effective, and upbringing, childhood experiences, education and religion are factors shaping the nurses’ core values.
Conclusion
A total of fifteen themes and subthemes emerged from this study. Most of the findings of this study were previously unknown or undervalued and might be helpful to inform nurses and nursing managers or leaders as well as healthcare policy makers. The results of this study might contribute to addressing the need for creating ethically sensitive health care services and ensuring nurses’ moral integrity and high quality of patient care.
... Healthcare decision making is built upon the axiom that autonomous individuals make choices that are in their own best interests and compatible with their moral frameworks (Milligan and Jones 2016). Autonomy is understood as (Milligan and Jones 2016) and is intrinsically valuable (Deans and Newson 2011). ...
... Healthcare decision making is built upon the axiom that autonomous individuals make choices that are in their own best interests and compatible with their moral frameworks (Milligan and Jones 2016). Autonomy is understood as (Milligan and Jones 2016) and is intrinsically valuable (Deans and Newson 2011). While consumers can choose whether to undergo testing, discussion of DTC genetic testing and autonomy is centred around consumer actions after testing. ...
Direct-to-consumer (DTC) genetic testing exists largely outside of any regulatory schemes, and studies providing a comprehensive overview of the ethical, social, legal, and technological considerations for regulating these types of technologies are lacking. This paper uses the 3-I framework for policy analysis to analyze the ideas, interests, and institutions relevant to policy development for DTC genetic testing in North America and internationally. A scoping review was conducted. Citation databases were searched for papers addressing the ethical, social, legal, and technological implications of DTC genetic testing; stakeholder perspectives on and experiences with DTC genetic testing; or the effect of such testing on the healthcare system. Ninety-nine publications, organizational reports, governmental documents, or pieces of legislation were included. The ideas included are autonomy, informed decision making, privacy, and clinical validity and utility. The interests discussed are those of the public and healthcare providers. The institutions included are regulatory organizations such as the Food and Drug Administration in the United States, laws governing the implementation or delivery of genetic testing in general, and legislation created to protect against genetic discrimination. This analysis clarifies the ethical, social, legal, and technological issues of DTC genetic testing regulation. This information can be used by policy makers to develop or strengthen regulations for DTC genetic testing such as requiring an assessment of the clinical validity of tests before they become publicly available, controlling how tests are marketed, and stipulating requirements for healthcare provider involvement and informed consent.
... Lengthy information can be confusing for patients [62]. Furthermore, trial information should be tailored according to the individual patient's core values and preferences [63]. Importantly, it has been cited in literature that patients may have misunderstood the purpose of a clinical trial [4,64] or the potential personal benefit from a clinical trial [65]. ...
Background
The increasing number of clinical research opportunities requires increasing numbers of participants in clinical trials. However, it may become increasingly problematic, as protocols have become increasingly complex. Better understanding of patients’ attitudes towards their potential participation in clinical trials is essential for developing effective clinical trial recruitment strategies. In Greece, limited research has been conducted on this topic so far. This study aims to contribute to filling this gap.
Methods
A cross-sectional study was conducted. Purposive sampling was used to select participants. The Greek version of a recently developed questionnaire measuring patient views on participation in clinical trials, a 27-item scale distributed into four factors, was tested. In addition, participants were asked to provide information regarding their socio-demographics. A demographic comparison was conducted.
Results
The four-factor solution derived in our study consisted of the same 27 items and it was different from the six-factor solution that Arnetz et al. proposed. The factors risks and benefits, that consisted of 5 and 3 items respectively in the six-factor solution, were merged into one factor that consisted of 10 items in the four-factor solution. The four factors produced were Risks and benefits (ten items, α = 0,867), Patient’s expectations (six items, α = 0.864), Patient’s participation (five items, α = 0.827), and Cost and convenience (five items, α = 0,770). We found that demographic factors did not impact patients’ opinions about clinical trials participation, except for gender. The participants reported as important for participating in clinical trial: receiving clear and adequate information (95,5 %) and being given the opportunity to ask questions (97,8 %), take part in discussions regarding their own treatment (94,6 %), and voice their concerns and opinions (91,1 %). As factors strongly associated with participants’ willingness to participate in a clinical trial were reported: concerns about the risks of being in a clinical trial (87,5 %), the possible side effects of clinical trials (86,3 %), the type of treatment given in a clinical trial (83,7 %), and whether participation would improve their quality of life (QoL) (81,5 %).
Conclusions
The preliminary validation of the Greek version of the questionnaire measuring patient perceptions and expectations of participating in clinical trials demonstrated acceptable validity and reliability and could be further tested in larger samples. The findings that emerged from this study are in line with previous literature.
The increasing volume of publicly available data brought about by digitalization offers researchers opportunities to examine public sentiment on various national and global issues. However, concerns linked to the use of publicly available data in digital research are insufficiently addressed. To ensure its ethical and trustworthy conduct, it is crucial to assess the public’s perception of digital research with publicly available data. We conducted 10 focus groups with 75 participants from the German-, French-, and Italian-speaking regions in Switzerland, reflecting nationwide perspectives on digital research with publicly available data. Through a thematic analysis, four major themes emerged: (1) expectations toward actors and digital research with publicly available data, such as alignment with research standards to promote result validity, using research findings for societal benefit, and ensuring transparency on data use through informed consent; (2) concerns about data reuse for purposes beyond the study’s objectives, especially for financial gain, as well as concerns about method reliability, data quality, and privacy; (3) mitigative measures to minimize potential harm, such as through the involvement of external oversight committees; and (4) supportive measures encompassing communication strategies to raise awareness and inform the public about the use of their data for research purposes. Our findings suggest public support for digital research with publicly available data provided that specific expectations are met. Developing a framework for legitimate digital research with publicly available data is identified as a valuable next step, with a focus on broadening public awareness on digital research with publicly available data through nationwide communication campaigns and introducing relevant oversight measures to foster trust.
While literature has already recognized the relational and collective impact of data processing, there is still limited understanding of how this affects the design of legislative instruments. We submit that legislators must recognize trade-offs between one’s own interests, the interests of other individuals, and collective or societal interests more explicitly in regulating data. To frame our analysis, we rely on a twofold definition of autonomy as a notion that inherently requires positioning oneself within a broader context with others. While the inward-looking dimension of autonomy focuses on the ability of an individual to make free and independent decisions in her own interests, the outward-looking dimension considers the relationship of one’s choices with other individuals’ and collective interests.
Building on this working definition of autonomy, we assess three legislative instruments, namely the General Data Protection Regulation, the Digital Markets Act and the Data Act proposal, to identify to what extent this multi-dimensional nature of autonomy is reflected in the design of data-related obligations. We examine how legislators can make trade-offs between different interests explicit and thereby bring the regulation of data more in line with the current societal reality that is increasingly dominated by relational and collective effects of data processing.
In recent times, informed consent has been adopted worldwide as a cornerstone to ensure autonomy during HIV testing. However, there are still ongoing debates on whether the edifice on which informed consent requirements are grounded, that is, personal autonomy, is philosophically, morally, and practically sound, especially in countries where HIV is an epidemic and/or may have a different ontological perspective or lived reality. This study explores the views of participants from Zambia. In-depth and focus group discussions were conducted at various locations in Lusaka and Chongwe, Zambia. Participants came from various demographics, including people living with HIV (PLHIV), healthcare professionals and workers, policymakers, pregnant women, churchgoers, teachers, rural-based persons, and police officers. Data were manually analysed by conducting inductive and deductive thematic analyses. Results show that participants were not in favour of HIV policies that promote personal autonomy at the expense of pursuit of the common good. Participants viewed interdependence, not autonomy, as an essential characteristic of being human. The participants’ views have a realistic potential to provide a contextual and appropriate ethical, respectful, and realistic foundation for HIV testing policies.
Travel for reproductive health care has become a widespread global phenomenon. Within the field, the decision to travel to seek third parties to assist with reproduction is widely assumed to be autonomous. However there has been scant research exploring the application of the principle of autonomy to the experience of the cross-border traveller. Seeking to contribute to the growing, but still small, body of sociological bioethics research, this paper maps the application of the ethical principle of autonomy to the lived experience of infertile individuals who cross borders for reproductive care. It examines their choices as patient, consumer and traveller. It suggests that their experience evidences a contradictory autonomy, which offers them both choice and no choice in their final decision to travel. The paper argues that this lack of meaningful autonomy is enabled by a medicalised framework of infertility which prioritises technology as the cure to infertility. This both shapes expectations of infertile individuals and limits their options of family creation. Ultimately, the paper suggests that sociological bioethics research shows that the liberatory credentials of technology should be questioned, and identifies that this field demands greater scholarly attention.
Rapid advancement of technologies continues to revolutionize healthcare foundations and outlook. Technological progress in medicine are not only continuing to improve quality of individual life but also generally improving quality of healthcare services. As a matter of fact, the most significant change in healthcare systems was the shift from standardized, patronizing and rigid physician–patient relationship to more patient-focused, personalized and participatory practice. With this shift came increased attention to the assurance of patient’s right to autonomy. Therefore, this article aims to discuss principal problematic aspects of patient’s right to autonomy hereby the patient’s role in the context of technologies and innovation. It is argued, that one of the effective ways to ensure patient’s right to autonomy is implementation of legal instruments, such as informed consent, advance directives and Ulysses contracts. However, this article also proposes, that with a potential of new technologies and artificial intelligence, these legal instruments need to be reconsidered and transformed in more efficient and eligible model, presenting information in more individualized, appealing and convenient manner.
People with dementia have worse outcomes associated with hospital admission, are more likely to have interventions and are less likely to be offered palliative care than people without dementia. Advance care planning for care home residents has been shown to reduce hospital admissions without increasing mortality. Studies have shown that staff confidence in managing delirium, a common reason for admission, improves with training. A service combining education for care home staff and advance care planning for care home residents with dementia was introduced to care homes in Boston, UK. There were improvements in staff confidence in recognition, prevention, management and knowledge of factors associated with delirium and dysphagia. 92% of carers rated the service <9/10. Admissions fell by 37% from baseline in the first year and 55% in the second and third years. All but one resident died in the preferred place of care.
Objective:
To identify patient's preferences for patient centred consultation in general practice.
Design:
Questionnaire study.
Setting:
Consecutive patients in the waiting room of three doctors' surgeries.
Main outcome measures:
Key domains of patient centredness from the patient perspective. Predictors of preferences for patient centredness, a prescription, and examination.
Results:
865 patients participated: 824 (95%) returned the pre-consultation questionnaire and were similar in demographic characteristic to national samples. Factor analysis identified three domains of patient preferences: communication (agreed with by 88-99%), partnership (77-87%), and health promotion (85-89%). Fewer wanted an examination (63%), and only a quarter wanted a prescription. As desire for a prescription was modestly associated with desire for good communication (odds ratio 1.20; 95% confidence interval 0.85 to 1.69), partnership (1.46; 1.01 to 2.09), and health promotion (1.61; 1.12 to 2.31) this study may have underestimated preferences for patient centredness compared with populations with stronger preferences for a prescription. Patients who strongly wanted good communication were more likely to feel unwell (very, moderately, and slightly unwell; odds ratios 1, 0.56, 0.39 respectively, z trend P<0.001), be high attenders (1.70; 1.18 to 2.44), and have no paid work (1.84; 1.21 to 2.79). Strongly wanting partnership was also related to feeling unwell, worrying about the problem, high attendance, and no paid work; and health promotion to high attendance and worry.
Conclusion:
Patients in primary care strongly want a patient centred approach, with communication, partnership, and health promotion. Doctors should be sensitive to patients who have a strong preference for patient centredness-those vulnerable either psychosocially or because they are feeling unwell.
To identify specific communication behaviors associated with malpractice history in primary care physicians and surgeons.
Comparison of communication behaviors of "claims" vs "no-claims" physicians using audiotapes of 10 routine office visits per physician.
One hundred twenty-four physician offices in Oregon and Colorado.
Fifty-nine primary care physicians (general internists and family practitioners) and 65 general and orthopedic surgeons and their patients. Physicians were classified into no-claims or claims (> or =2 lifetime claims) groups based on insurance company records and were stratified by years in practice and specialty.
Audiotape analysis using the Roter Interaction Analysis System.
Significant differences in communication behaviors of no-claims and claims physicians were identified in primary care physicians but not in surgeons. Compared with claims primary care physicians, no-claims primary care physicians used more statements of orientation (educating patients about what to expect and the flow of a visit), laughed and used humor more, and tended to use more facilitation (soliciting patients' opinions, checking understanding, and encouraging patients to talk). No-claims primary care physicians spent longer in routine visits than claims primary care physicians (mean, 18.3 vs 15.0 minutes), and the length of the visit had an independent effect in predicting claims status. The multivariable model for primary care improved the prediction of claims status by 57% above chance (90% confidence interval, 33%-73%). Multivariable models did not significantly improve prediction of claims status for surgeons.
Routine physician-patient communication differs in primary care physicians with vs without prior malpractice claims. In contrast, the study did not find communication behaviors to distinguish between claims vs no-claims surgeons. The study identifies specific and teachable communication behaviors associated with fewer malpractice claims for primary care physicians. Physicians can use these findings as they seek to improve communication and decrease malpractice risk. Malpractice insurers can use this information to guide malpractice risk prevention and education for primary care physicians but should not assume that it is appropriate to teach similar behaviors to other specialty groups.
Editorial by Richards and Coulter
Shared decision making, in which patients and health professionals join in both the process of decision making and ownership of the decision made, is attracting considerable interest as a means by which patients' preferences can be incorporated into clinical decisions.1 When there are several treatment options which may have different effects on the patient's quality of life, there is a strong case for offering patients choice. Their active involvement in decision making may increase the effectiveness of the treatment.
Trials are currently under way to test this hypothesis formally, but there are good grounds for optimism. Patients with hypertension benefit if they are allowed to adopt an active rather than a passive role in treatment, 2 3 patients with breast cancer suffer less depression and anxiety if they are treated by doctors who adopt a participative consultation style,4 and patients who are more actively involved in discussions about the management of their diabetes achieve better blood sugar control.5 Patients whose doctors are ignorant of their values and preferences may receive treatment that is inappropriate to their needs.6–8
Patients cannot express informed preferences unless they are given sufficient and appropriate information, including detailed explanations about their condition and the likely outcomes with and without treatment. Yet many report considerable difficulties in obtaining relevant information.9 There are various reasons for this. Health professionals frequently underestimate patients' desire for and ability to cope with information. Consultation times are limited—there is often insufficient time to explain fully the condition and the treatment choices. Health professionals may themselves lack knowledge of treatment options and their effects. A solution to this problem is to ensure that patients have access to written or audiovisual material, to inform themselves and to use in discussion with health …
Competencies for the practice of informed shared decision making by physicians and patients are proposed. The competencies are a framework for teaching, learning, practice, and research. Challenges to putting informed shared decision making into practice are perceived lack of time, physicians' predisposition and skill, and patients' inexperience with making decisions about treatment.
The second half of the consultation is where decisions are made and future management agreed. We argue that this part of the clinical interaction has been 'neglected' during a time when communication skill development has been focused on uncovering and matching agendas. There are many factors, such as the increasing access to information and the emphasis on patient autonomy, which have led to the need to give more attention to both the skills and the information required to appropriately involve patients in the decision-making process. This analysis, based on a literature review, considers the concept of 'shared decision-making' and asks whether this approach is practical in the primary care setting. This study, and our ongoing research programme, indicates that future developments in this area depend on increasing the time available within consultations, require improved ways of communicating risk to patients, and an acquisition of new communication skills.
Patient involvement is being encouraged by the government and by others as a way of improving the quality of the service provided in general practice. Patients can be involved in their own individual care; for example, in treatment decision making and in disease management; or collectively, by providing feedback on aspects of practice organisation and quality. Active participation in treatment decisions and in self management of chronic conditions can benefit patients in the short-term and may lead to better health outcomes in the longer term, although the evidence for this is currently equivocal. However, the ethical and societal arguments in its favour seem overwhelming. Helping patients to help themselves makes sense for general practitioners as well. Strengthening patients' coping skills could help to reduce inappropriate demands on their time. Involving the public in quality improvement activities has become a key policy direction, and trusts will be required to survey their patients on an annual basis. The proposed new general practitioner contract has recognised the importance of the patient's perspective in its quality framwork. Practices that want to anticipate these trends should look for patient survey instruments to obtain feedback on their organisation and the interpersonal skills of the clinicians.
The expectation that patients will become increasingly involved in making treatment decisions poses new challenges for doctors. This article discusses what these are and how doctors might, face them.
The authors analyzed online consumer health information related to screening tests to see how well this information meets known standards for supporting the understanding of test uncertainty.
MedlinePlus documents regarding maternal serum screening (6), prostate-specific antigen testing (6), and screening mammography (6) were analyzed.
The content of the documents was analyzed.
This study showed that most sites conscientiously report that tests are less than 100% accurate, but few provide important details about the level of uncertainty associated with test results. In particular, few resources give information about the predictive value of screening tests and have little mention of the fact that predictive value is influenced by the a priori likelihood of having the condition.
These results suggest that online consumer health information does not adequately support decisions about medical screening. We suggest a potential solution to the problem: metadata harvesting coupled with optimized presentation techniques to format personalized information about screening tests. Using these techniques, the empowerment of personal choice in matters of health decisions could become the de facto standard.
Substantial efforts have recently been made to reform the physician-patient relationship, particularly toward replacing the `silent world of doctor and patient' with informed patient participation in medical decision-making. This 'new ethos of patient autonomy' has especially insisted on the routine provision of informed consent for all medical interventions. Stronly supported by most bioethicists and the law, as well as more popular writings and expectations, it still seems clear that informed consent has, at best, been received in a lukewarm fashion by most clinicians, many simply rejecting what they commonly refer to as the `myth of informed consent'.
The purpose of this book is to defuse this seemingly intractable controversy by offering an efficient and effective operational model of informed consent. This goal is pursued first by reviewing and evaluating, in detail, the agendas, arguments, and supporting materials of its proponents and detractors. A comprehensive review of empirical studies of informed consent is provided, as well as a detailed reflection on the common clinician experience with attempts at informed consent and the exercise of autonomy by patients.
In the end, informed consent is recast as a management tool for pursuing clinically and ethically important goods and values that any clinician should see as meriting pursuit. Concurrently, the model incorporates a flexible, anticipatory approach that recognizes that no static, generic ritual can legitimately pursue the quite variable goods and values that may be at stake with different patients in different situations. Finally, efficiency of provision is addressed by not pursuing the unattainable and ancillary. Throughout, the traditional principle of beneficence is appealed to toward articulating an operational model of informed consent as an intervention that is likely to change outcomes at the bedside for the better.
Women have historically been prevented from living autonomously by systematic injustice, subordination, and oppression. The lingering effects of these practices have prompted many feminists to view autonomy with suspicion. This book defends the ideal of feminist autonomy. The book proposes that behavior is autonomous if it accords with the wants, cares, values, or commitments that the actor has reaffirmed and is able to sustain in the face of opposition. By this account, autonomy is socially grounded yet also individualizing and sometimes socially disruptive, qualities that can be ultimately advantageous for women. The book applies the concept of autonomy to domains of special interest to women. It defends the importance of autonomy in romantic love, considers how social institutions should respond to women who choose to remain in abusive relationships, and argues that liberal societies should tolerate minority cultural practices that violate women's rights so long as the women in question have chosen autonomously to live according to those practices.
Informed consent is a central topic in contemporary biomedical ethics. Yet attempts to set defensible and feasible standards for consenting have led to persistent difficulties. In Rethinking Informed Consent in Bioethics Neil Manson and Onora O'Neill set debates about informed consent in medicine and research in a fresh light. They show why informed consent cannot be fully specific or fully explicit, and why more specific consent is not always ethically better. They argue that consent needs distinctive communicative transactions, by which other obligations, prohibitions, and rights can be waived or set aside in controlled and specific ways. Their book offers a coherent, wide-ranging and practical account of the role of consent in biomedicine which will be valuable to readers working in a range of areas in bioethics, medicine and law.
Forms were most commonly considered to be for purposes of treatment authorization (74.6%) or to protect against liability (58.7%). Forty percent of forms appeared to be for the purpose of clarifying information about the procedure, 13.9% had a stated purpose for aiding patients in decision making, and 18.8% referred to nonclinical issues, such as disposal methods for removed body parts. Phrases such as, "I certify that no guarantee or assurance has been made as to the results that may be obtained," and "I am aware that the practice of medicine and surgery is not an exact science and I acknowledge that no guarantees have been made to me as to the results of treatments or examinations performed in this hospital" were common. A few forms included statements indicating that the purpose of the form was for patient information. In these instances, the forms included statements such as, "You have the right . . . to be informed about your condition and the recommended surgical, medical, or diagnostic procedure to be used so that you may make the decision whether or not to undergo the procedure after knowing the risks and hazards involved. This disclosure is not meant to scare or alarm you; it is simply an effort to make you better informed so you may give or withhold your consent to the procedure."
Only 26.4% of forms included all 4 of the accepted basic elements of informed consent, 34.8% included 3 of 4 elements, 22.7% had 2 of 4 elements, 13.8% had only 1 element, and 2.4% included none of the required elements (data not shown). Forms from the states that required "all" 4 basic elements be provided to patients during informed consent discussions (n = 7) were no more likely to include information beyond risks than forms from states requiring "some" (n = 12) or "none" (n = 9) of the elements (Fisher exact test = 1.000), nor were they more likely to mention elements of structured deliberation than forms in other states (χ² = 1.48, P = .22).
Inadequately or legalistically crafted forms also have risks for patients. Forms with a solely legalistic appearance may lead to either cursory or suspicious reading of forms, and therefore, an inadequate or distorted understanding. Given that patients generally have limited recall of information from informed consent discussions,¹² and concerns regarding patient understanding of treatment issues,¹⁵ anything that discourages or distorts patient interest in the informed consent process is problematic. While we concur with previously recommended strategies for formatting forms to make included information more accessible to patients,¹⁸,24 significant improvements in informed consent will require improvements in the information content of forms and redesign of forms so that they facilitate the substance of a shared decision-making process. Necessary legal statements—for instance, appraising patients of their rights and the hospital's obligations—might be better handled separately from the decision-making process such as in a general statement on the conditions of admission. A form that focuses instead on the promotion of information about the procedure might even lower the possibility of lawsuits, since shared decision making fosters a good patient-physician relationship, which may reduce medical litigation.³²,33
Vulnerability has been extensively discussed in medical research, but less so in health care. Thus, who the vulnerable in this domain are still remains an open question. One difficulty in their identification is due to the general criticism that vulnerability is not a property of only some, but rather of everyone. By presenting a philosophical analysis of the conditions of vulnerability ascription, we show that these seemingly irreconcilable understandings of vulnerability are not contradictory. Rather, they are interdependent: they refer to the same concept with different likelihoods of manifestation. We argue that the general vulnerability of living beings relies on their having certain types of interests. In health care, those individuals are particularly vulnerable who are more likely to have these interests unjustly considered. They should be afforded special protection in order to receive what is due to everyone, but which they are likely to fail to receive.
In the literature on medical ethics, it is generally admitted that vulnerable persons or groups deserve special attention, care or protection. One can define vulnerable persons as those having a greater likelihood of being wronged - that is, of being denied adequate satisfaction of certain legitimate claims. The conjunction of these two points entails what we call the Special Protection Thesis. It asserts that persons with a greater likelihood of being denied adequate satisfaction of their legitimate claims deserve special attention, care or protection. Such a thesis remains vague, however, as long as we do not know what legitimate claims are. This article aims at dispelling this vagueness by exploring what claims we have in relation to health care - thus fleshing out a claim-based conception of vulnerability. We argue that the Special Protection Thesis must be enriched as follows: If individual or group X has a greater likelihood of being denied adequate satisfaction of some of their legitimate claims to (i) physical integrity, (ii) autonomy, (iii) freedom, (iv) social provision, (v) impartial quality of government, (vi) social bases of self-respect or (vii) communal belonging, then X deserves special attention, care or protection. With this improved understanding of vulnerability, vulnerability talk in healthcare ethics can escape vagueness and serve as an adequate basis for practice.
This study examines the dominant normative perceptions of parenting a child with Down Syndrome, and the relationship of these perceptions to willingness to consider selective termination subsequent to a foetal diagnosis of Down Syndrome. Within a community sample (N = 355), the perceptions of parenting a child with Down Syndrome were less positive than those of parenting either a child with muscular dystrophy or a child with no disability, especially in terms of the anticipated rewards (personal enrichment and family continuity) associated with the parenting experience. Further, the expectation of less personal enrichment as a result of parenting a child with Down Syndrome emerged as a significant predictor of willingness to abort a diagnosed foetus, although the expectation of enhanced parental costs did not, suggesting that it is the perception of fewer rewards associated with parenting a child with Down Syndrome that are salient in decisions regarding selective abortion. The role of negative stereotypes and implications for interventions are discussed.
This book defends an expressive-collaborative model of morality that challenges common assumptions in philosophical ethics. Morality is best revealed in practices of responsibility that express shared understandings about who we are, what we value, and to whom we are accountable for what we do. Morality is collaborative as we reproduce or shift our moral understandings together in many daily interactions of social life. For this reason, moral practices cannot be separated from other social practices, nor moral identities from social roles and institutions in particular ways of life; morality is not socially modular. But not everyone has the same power to set or change moral terms, and differently valued social-moral identities with different responsibilities and privileges are the rule in human societies. This book argues for empirically informed and politically critical ethics that aims for transparency about the moral significance of social differences including, but not only, gender differences. The book responds to the work of major philosophers of the 20th century, such as Bernard Williams, John Rawls, Robert Goodin, Charles Taylor, and Alasdair MacIntyre, while putting the tools of feminist epistemology and ethics to use. It also challenges uncritical assumptions in academic ethics about what we are in a position to know and for whom we are in a position to speak. This text is the second edition and contains an updated view of the state of moral philosophy, a new chapter on the moral and epistemological significance of public projects of truth-telling, and a concluding response to some common questions about the book.
“Our dancing is changed into mourning” Lamentations 5:15 to “you turned my lament into dancing” Psalm 30:12.
Numerous studies and well publicised complaints from the public have long revealed a pressing need for physicians to improve their communication skills and their ability to interpret and respond appropriately to what they hear from patients. Rushed and dispirited, physicians are routinely urged to become more compassionate and to spend more time listening. This article challenges the myth that listening is a time consuming art propelled by compassion and demonstrates that it is in fact a highly active professional skill that can be greatly clarified and simplified for practising physicians. The lament is offered as a universally encountered, sometimes masked, expression that patients need to have heard and validated. An intellectual understanding of the lament as a symptom of suffering greatly facilitates the listening process and enables the listener to respond therapeutically. This saves time, improves quality of care, and enhances the wellbeing and satisfaction of both physician and patient.
Hypatia 16.3 (2001) 172-176
Diagnosis: Difference: The Moral Authority of Medicine. By Abby L. Wilkerson. Ithaca: Cornell University Press, 1998.
In this compact volume, Abby Wilkerson makes several important contributions to the burgeoning literature of feminist (bio)ethics by providing substantive arguments in support of some of the key intuitive beliefs that are central to much feminist bioethics thinking. Most centrally, she carefully fleshes out a feminist case for re-framing traditional bioethics approaches to the relation between health and justice. Particularly valuable is her richly detailed argument establishing the importance of bringing to the realm of health and health care Iris Marion Young's (1990) important insight that justice involves far more than questions of distribution.
At the same time, Wilkerson demonstrates another major feminist tenet: that ethics and epistemology are intimately related. This connection is developed through a second major theme in which she systematically tracks medicine's tendency to extend its accepted epistemic authority over physical ailments into a general authority over many other aspects of life. She documents examples of medicine's success in leveraging its scientific knowledge about certain aspects of the body into a broader ideological vision through which it claims epistemic authority in the personal and moral realm. By making explicit the gaps between medical knowledge and moral knowledge, she is able to challenge the moral authority and social power that are now granted to medical experts.
While these arguments are important, they are not the whole story of the book, for its message is as much about process in bioethics as it is about conclusions. Wilkerson insists that the specific perspective of the theorist affects her/his reasoning. She demonstrates the importance of this fact by using her own distinct position as a bisexual woman to make visible the implicit acceptance and perpetuation of several ideological norms by those in dominant positions in both medicine and bioethics. The central method of the book is what she calls "material-semiotic." It involves the assumption that all human experience is mediated by culture, and the body (specifically the medicalized body) must be recognized as a political site subject to a variety of social values. We must, therefore, attend to the cultural meanings of health and illness and explore the ways that society labels and responds to these conditions. This requires investigation of the specific bodily (material) effects of these meanings in both individual and social experience.
The book begins with the epistemological frame of the argument in which Wilkerson claims that medicine is deeply infected by the values and biases of the dominant culture, including its tendencies towards sexist, racist, classist, homophobic, and ablist attitudes. She explores ways in which medical theory and practice stigmatize bodily experiences common to women (in gynecology, obstetrics, and the treatment of victims of sexual or domestic violence). Medicalizing so many aspects of women's experience has the effect of obscuring women's subjective experiences and replacing them with medicine's normative perspectives of appropriate psychological norms. Moreover, the norm of femaleness promoted is a heterosexual, middle class, white variety such that other forms of social difference (e.g., non-white, non-heterosexual) must then also be medicalized and stigmatized; that is, the medical model requires explanations of difference that render pathological most variations on the privileged norm. Hence, alternative sexualities, like differences in class, abilities, race, and gender are interpreted through a medical lens that is thoroughly value-laden. In such ways, the epistemological authority granted to medicine is conflated into an unjustified form of moral authority. Although similar biases are common to every powerful social institution in the United States, they are especially pernicious within medicine because of the enormous influence it exerts in shaping knowledge about the nature of difference between social groups. This immense social power may be directed towards reducing inequalities and promoting social justice, but, all too often, it is used to convey beliefs and norms that serve the interests of the privileged.
Wilkerson's criticism is not reserved for medical practitioners alone. She also investigates ways in which bioethicists support medicine in its oppressive exercise of moral and political authority. She...
A rising number of patients require continuing or palliative services and this means that they will need to transition from one model of healthcare delivery to another. If it is generally recognised that patient vulnerability to inadequate services increases when the setting in which patient receives care changes, it is usually taken to be the result of poor coordination of services or personnel. Recognising that an integrated system is essential to adequate access, the point that I put forward in this paper is that the centrality of acute care services affects the way in which chronic and palliative services are structured and, consequently, their availability. I argue that the problem originates in the manner in which some of the foundational concepts of the acute care model are imported into the other models of care delivery.In order to make this case, I review the three main models of healthcare service delivery by focusing my analysis along three axes: the goal of the care model; the predominant understanding of autonomy implicit in the model; and, the main actors in the care relationship. By examining how the various concepts translate from one model to the next, I discuss what I identify to be one of the main conceptual obstacles to less problematic transitioning, the notion of autonomy and the corresponding view of the patient as an isolated agent.
Is important, so there needs to be a national strategy to ensure it
Information in Practice pp 263, 264
Leaflets and other information packages (video and audio tapes, computer programs, and websites) have long been seen as integral to educational strategies designed to promote health, persuade people to adopt healthy lifestyles, and increase uptake of screening. They have also been developed to educate patients in self care of such chronic conditions as arthritis, hypertension, stress related psychological problems, gastrointestinal diseases, and back pain, and how to take medicines correctly. There is now growing interest in providing information to support patients' participation in choosing treatments and deciding on strategies for managing their health problems.1 Much well intentioned effort goes into developing such material, but good intentions are not enough to guarantee quality and usefulness, as two papers in this week's issue show (pp 263, 264). 23 If patients …
ConsentInformed ConsentThe History of Informed ConsentInformed Consent as Protection from LitigationPaternalism and Medical Decision-MakingReferences
Narrative Intelligence (NI) — the confluence of narrative, Artificial Intelligence, and media studies — studies, models, and supports the human use of narrative to understand the world. This volume brings together established work and founding documents in Narrative Intelligence to form a common reference point for NI researchers, providing perspectives from computational linguistics, agent research, psychology, ethology, art, and media theory. It describes artificial agents with narratively structured behavior, agents that take part in stories and tours, systems that automatically generate stories, dramas, and documentaries, and systems that support people telling their own stories. It looks at how people use stories, the features of narrative that play a role in how people understand the world, and how human narrative ability may have evolved. It addresses meta-issues in NI: the history of the field, the stories AI researchers tell about their research, and the effects those stories have on the things they discover. (Series B)
The last year of life is often associated with a high level of healthcare utilisation and cost. To date, little information is available regarding the healthcare utilisation patterns in the last year of life in New Zealand.
To describe the healthcare utilisation patterns and costs of the residents of Counties Manukau District Health Board (CMDHB) region in the 1-year period prior to death in 2008.
CMDHB residents who died in 2008 were identified from the National Mortality Dataset. The health services utilisation patterns and costs in the last year of life were derived from National Minimum Dataset (NMDS), Pharmaceutical Collection, Laboratory Claims Collection, and National Non-Admitted Patient Collection via encrypted NHI linkage.
Forty percent of all deaths in 2008 in CMDHB occurred in a publicly funded hospital. Just over 80% of people had at least one inpatient hospital stay in the last year of life. More than 75% of the healthcare costs funded by CMDHB in the last year of life were related to inpatient hospitalisations. The average cumulative length of inpatient stay over the year in the people who had an inpatient event was 20.6 days. Outpatient, pharmaceutical, and laboratory services were received by 84%, 91%, and 86% of people respectively in their last year of life.
Consistent with the international literature, this study found that CMDHB residents in the last year of life have a high level of health service utilisation. Decisions about the appropriate use of high cost health services in people towards the end of life can be extremely challenging. These decisions are resource allocation decisions as well as clinical decisions and should be based on clinical factors, cost utilities, and patient, family, and society's expectations.
Many clinicians have called for an increased emphasis on the patient's role in clinical decision making. However, little is known about the extent to which physicians foster patient involvement in decision making, particularly in routine office practice.
To characterize the nature and completeness of informed decision making in routine office visits of both primary care physicians and surgeons.
Cross-sectional descriptive evaluation of audiotaped office visits during 1993.
A total of 1057 encounters among 59 primary care physicians (general internists and family practitioners) and 65 general and orthopedic surgeons; 2 to 12 patients were recruited from each physician's community-based private office.
Analysis of audiotaped patient-physician discussions for elements of informed decision making, using criteria that varied with the level of decision complexity: basic (eg, laboratory test), intermediate (eg, new medication), or complex (eg, procedure). Criteria for basic decisions included discussion of the nature of the decision and asking the patient to voice a preference; other categories had criteria that were progressively more stringent.
The 1057 audiotaped encounters contained 3552 clinical decisions. Overall, 9.0% of decisions met our definition of completeness for informed decision making. Basic decisions were most often completely informed (17.2%), while no intermediate decisions were completely informed, and only 1 (0.5%) complex decision was completely informed. Among the elements of informed decision making, discussion of the nature of the intervention occurred most frequently (71 %) and assessment of patient understanding least frequently (1.5%).
Informed decision making among this group of primary care physicians and surgeons was often incomplete. This deficit was present even when criteria for informed decision making were tailored to expect less extensive discussion for decisions of lower complexity. These findings signal the need for efforts to encourage informed decision making in clinical practice.
To ascertain whether the quality of physician-patient communication makes a significant difference to patient health outcomes.
The MEDLINE database was searched for articles published from 1983 to 1993 using "physician-patient relations" as the primary medical subject heading. Several bibliographies and conference proceedings were also reviewed.
Randomized controlled trials (RCTs) and analytic studies of physician-patient communication in which patient health was an outcome variable.
The following information was recorded about each study: sample size, patient characteristics, clinical setting, elements of communication assessed, patient outcomes measured, and direction and significance of any association found between aspects of communication and patient outcomes.
Of the 21 studies that met the final criteria for review, 16 reported positive results, 4 reported negative (i.e., nonsignificant) results, and 1 was inconclusive. The quality of communication both in the history-taking segment of the visit and during discussion of the management plan was found to influence patient health outcomes. The outcomes affected were, in descending order of frequency, emotional health, symptom resolution, function, physiologic measures (i.e., blood pressure and blood sugar level) and pain control.
Most of the studies reviewed demonstrated a correlation between effective physician-patient communication and improved patient health outcomes. The components of effective communication identified by these studies can be used as the basis both for curriculum development in medical education and for patient education programs. Future research should focus on evaluating such educational programs.
The moral expertise of clinical ethicists is not a question of mastering codelike theories and lawlike principles. Rather, ethicists are architects of moral space within the health care setting, as well as mediators in the conversations taking place within that space.
Informed consent forms should document and reflect the goals of informed consent and shared decision making. We conducted this study to examine the extent to which informed consent for procedure forms meet accepted informed consent standards, how well state informed consent statutes correlate with these standards, and whether existing forms can enhance the interactions between patients and physicians or other health care providers.
Informed consent forms do not meet accepted standards. A different format may be more useful for patient-physician interactions.
A content analysis was conducted of hospital informed consent for procedure forms from a random selection of hospitals in the 1994 American Hospital Association membership directory. Forms were examined for evidence of the basic elements of informed consent (nature of the procedure, risks, benefits, and alternatives) and items that might enhance patient-physician interactions and encourage shared decision making. UNIT OF ANALYSIS: From 157 hospitals nationwide, 540 hospital informed consent for procedure forms were examined.
Ninety-six percent of forms indicated the nature of the procedure, but risks, benefits, and alternatives were found less often. Only 26% of forms included all 4 basic elements, 35% included 3 of 4 elements, 23% had 2 of 4 elements, 14% had only 1 element, and 2% had none of the elements. Forms appear to authorize treatment (75%) or protect hospitals and caregivers from liability (59%) rather than clarify information about procedures (40%) or aid patients in decision making (14%). Forms from states with statutes that require that all 4 elements be provided were no more likely than other states to include them (Fisher exact test = 1.000). Fewer than 40% of forms supported models of shared decision making.
The content of most forms did not meet accepted standards of informed consent or patient-physician interactions. We propose a form that more fully supports the models of ideal informed consent and shared decision making to enhance the applicability of informed consent in the clinical setting.
The shift of healthcare to the ambulatory care setting has resulted in a dramatic increase in the burden placed on a patient's family and other loved ones. Despite this fact, caregiver burden and burnout are probably greatly underidentified by primary care physicians. The authors of this article provide information that will help to better identify and manage these trying situations. They also alert physicians to the possibility of their own burnout and the need to maintain a healthy perspective.
to describe levels of knowledge relevant to genetic screening in a sample of midwives and obstetricians in the late 1990s, and to compare these with those found by Smith et al. in London and Wales, and reported in 1994; to describe health professionals' perceptions of an appropriate counselling process relating to genetic screening in comparison with recognised good practice; and to consider links between knowledge and perceptions of the counselling process.
a questionnaire study, including responses to a counselling scenario.
responses were obtained from 81 midwives and obstetricians from maternity services in the North West of England.
knowledge about procedures was very good, but knowledge about the probability of genetic abnormality was relatively poor, and respondents overestimated the efficacy and usefulness of tests. These findings were similar to those of Smith et al. (1994), suggesting that they are a good reflection of the national picture. In terms of reported information-giving and counselling practice, there were some respondents who would not check the woman's understanding of her baby's risk of a genetic abnormality, or the risk of a false result. Some respondents would give information based on their own (necessarily limited) experience, rather than national statistics, and give advice based on the choices they themselves would make. These findings reflect earlier, basic research on people's understanding of probabilistic information.
the findings of this study, together with those of earlier work cited, suggest a need for education and training which includes a specific focus on biases in understanding this type of probabilistic information. They also raise the question as to why tests which provide probabilistic data have been introduced without consideration of the known problems in understanding such information.
Principle-based formulations of bioethical theory have recently come under increasing scrutiny, particularly insofar as they
give prominence to personal autonomy. This essay critiques the dominant conceptualization of autonomy and urges an alternative
formulation freed from the individualistic assumptions that pervade the prevailing framework. Drawing on feminist perspectives,
I discuss the need for a vision of patient autonomy that joins relational experiences to individuality and acknowledges the
influence of patterns of power and authority on the exercise of patient agency. Deficiencies in the current models of science
and social relations guiding medical practice are analyzed, particularly (1) the tendency to disregard the patient's self-knowledge
and (2) failure to recognize limitations on the generalizability of medical knowledge. Models of social relations such as
mothering and friendship are explored to advance a conception of autonomy better suited to the practical activities of medicine.
In conclusion, I consider how acknowledgement of the specificity and complexity of social relations can contribute to reconfiguration
of other principles comprising the standard framework of bioethics, particularly beneficence, justice, and equality.
to explore the information that practitioners perceive they give to pregnant women about the condition of Down's syndrome, and to look at some influences on the construction of this information.
qualitative study incorporating semi-structured interviews with practitioners followed by multidisciplinary discussion groups led by a health-care ethicist.
inner-city teaching hospital and district general hospital situated in South East England.
seventy practitioners whose work relates directly or indirectly to perinatal care.
although women were seen to vary in their knowledge about Down's syndrome, practitioners felt that many did not understand the basic features of the condition. Practitioners themselves rarely had any practical experience or knowledge of people with Down's syndrome. This led to a reliance on 'medical textbook' information, which tends to focus primarily on the potential problems of the condition. Due to lack of time, practitioners also relied on the use of information leaflets. However, much more space in these was devoted to explaining the actual screening process rather than the condition, and the very brief descriptions of Down's syndrome lacked any positive statements.
informed choice in antenatal screening must be based on balanced information about 'screened for' conditions. Education about conditions set within a broader context of disability awareness could help to avoid the 'checklist' type approach used by many respondents. Practitioners and maternity units as a whole should reflect critically on the origins of the information they are conveying to prospective parents about what it means to live with Down's syndrome. Midwives and others involved in prenatal screening need to be aware of their own feelings about screening and disability. Midwives should also be involved in the planning of any future antenatal screening developments within their workplaces, and it is essential that they prospectively highlight factors such as lack of time and knowledge, which they feel inhibits their ability to facilitate informed choice. Research is needed which explores the consequences of allocating substantial resources into ensuring that women are fully informed about an increasingly complex antenatal screening process.
Decision aids help patients make treatment choices. There is little empirical evidence to explain how they work. The results from this randomised controlled trial comparing routine with decision-aided consultations in the prenatal diagnosis for Down's syndrome context are used to describe the strategies employed during decision making, to assess the impact of a decision aid on decision processes, and to investigate decision process and outcome associations. Data were elicited from two content analyses of consultation transcripts and questionnaires assessing knowledge, anxiety, decisional conflict, reasons, and information usefulness. 68/106 women completed measures at consultation and follow-up. Decision-aided women employed more cognitive and emotional strategies during decision making. More negative evaluations during decision making were associated with better outcomes. Decision-aided consultations facilitated the employment of strategies associated with more effective choices. These consultations take longer and elicit greater expressions of negative affect, so may be less rewarding encounters for health professionals.
Narrative is ever present in medicine and is an integral aspect of the doctor and patient relationship. Although theoretical discussions of narrative medicine and narrative ethics are important, they may serve to reify the patient's story, to make it a specific entity. In practice, the patient's story unfolds in the moment of communication depending on the individuals and the circumstances; the story is not an "object." Patients' narratives heard in clinical settings are often limited by physician behaviors, especially the tendency of physicians to control the interaction with the patient. To develop individual narratives effectively and competently, physicians must be able to help the patient tell the story that is most important, meaningful, and descriptive of the situation. If the patient's narrative is not heard fully, the possibility of diagnostic and therapeutic error increases, the likelihood of personal connections resulting from a shared experience diminishes, empathic opportunities are missed, and patients may not feel understood or cared for. The practice of mindfulness--moment-to-moment, nonjudgmental awareness--opens a doorway into the patient's story as it unfolds. Such mindful practice develops the physician's focus of attention and offers the possibility for a meaningful and important narrative to arise between patient and physician.
Given the fluidity with which the term shared decision making (SDM) is used in teaching, assessment and research, we conducted a focused and systematic review of articles that specifically address SDM to determine the range of conceptual definitions.
In April 2005, we ran a Pubmed (Medline) search to identify articles published through 31 December 2003 with the words shared decision making in the title or abstract. The search yielded 681 citations, 342 of which were about SDM in the context of physician-patient encounters and published in English. We read and reviewed the full text of all 342 articles, and got any non-redundant references to SDM, which yielded an additional 76 articles.
Of the 418 articles examined, 161 (38.5%) had a conceptual definition of SDM. We identified 31 separate concepts used to explicate SDM, but only "patient values/preferences" (67.1%) and "options" (50.9%) appeared in more than half the 161 definitions. Relatively few articles explicitly recognized and integrated previous work.
Our review reveals that there is no shared definition of SDM. We propose a definition that integrates the extant literature base and outlines essential elements that must be present for patients and providers to engage in the process of SDM.
The integrative definition of SDM is intended to provide a useful foundation for describing and operationalizing SDM in further research.