The Practical Application of Narrative Medicine at Mayo Clinic: Imagining the Scaffold of a Worthy House

American health care institutions increasingly recognize narrative medicine as a means to developing quality patient care. More commonly applied in health care professional development settings, narrative medicine is less overtly employed with patient populations. In this article, we describe the application of various narrative practices in the patient care and medical education programs of a major health care center in Minnesota. We discuss the impact of these programs on their participants in relation to the evidence based in current scholarship. Further, we examine narrative externalization of illness in Katherine Butler Hathaway’s disability memoir “The Little Locksmith,” a text which implicates the work of metaphor-making as a transformative step in healing. While several reports demonstrate that patients can find creative writing during times of illness to be therapeutic, there are many for whom the practice is problematic or unattractive, obstacles to practice implementation that the authors discuss. However, based on the experience of our institution, for health care institutions seeking to build a legacy of leadership in empathic patient care, narrative—employed in mentoring physicians in training and in establishing strong, dialogic relationships with patients and colleagues—should serve as a central strategy, or scaffold.     

Finding A Seat at the Table Together: Recommendations for Improving Collaboration between Social Work and Bioethics

Social work and bioethics are fields deeply committed to cross‐disciplinary collaboration to do their respective work. While scholars and practitioners from both fields share a commitment to social justice and to respecting the dignity, integrity and the worth of all persons, the overlap between the fields, including shared values, has received little attention. The purpose of this article is to describe the ways in which greater collaboration between the two fields can broaden their scope, enrich their scholarship, and better ground their practice. We describe the potential for realizing such benefits in two areas – health care ethics consultation and social inequalities in health – arguing that the fields both complement and challenge one another, making them ideal partners for the interdisciplinary inquiry and problem‐solving so often called for today in health and health care.     

Beneficial Coercion in Psychiatric Care: Insights from African Ethico‐Cultural System

There is a ‘catch 22’ situation about applying coercion in psychiatric care. Autonomous choices undeniably are rights of patients. However, emphasizing rights for a mentally‐ill patient could jeopardize the chances of the patient receiving care or endanger the public. Conversely, the beneficial effects of coercion are difficult to predict. Thus, applying coercion in psychiatric care requires delicate balancing of individual‐rights, individual well‐being and public safety, which has not been achieved by current frameworks. Two current frameworks may be distinguished: the civil liberty approach and the Stone model. Both frameworks are restrictive, and not respectful of human dignity. In a civil liberty approach, individuals who are severely mentally‐ill but not dangerous would be denied care because they do not meet the dangerousness threshold or because the use of coercion will not lead to rebirthing of autonomy. This is unsatisfactory. Albeit involuntary interventions such as talk therapies, peer‐support etc., may not always lead to rebirthing of autonomy or free patients from mental illness; they can however help to maintain the dignity of each mentally ill patient. In place of these frameworks, this study proposes a new ethical framework for applying coercion in psychiatric care that is respectful of human dignity. Specifically, it draws on insights from the African ethico‐cultural system by using the Yoruba concept Omo‐olu‐iwabi to develop this new framework. This way, the study shows that only a more respectful approach for applying coercion in psychiatric care can lead to the careful balancing of the competing interests of individual's rights, individual's well‐being and public safety.     

UNDIGNIFIED BIOETHICS

The concept of dignity is pervasive in bioethics. However, some bioethicists have argued that it is useless on three grounds: that it is indeterminate; that it is reactionary; and that it is redundant. In response, a number of defences of dignity have recently emerged. All of these defences claim that when dignity is suitably clarified, it can be of great use in helping us tackle bioethical controversies. This paper rejects such defences of dignity. It outlines the four most plausible conceptions of dignity: dignity as virtuous behaviour; dignity as inherent moral worth; Kantian dignity; and dignity as species integrity. It argues that while each conception is coherent, each is also fundamentally flawed. As such, the paper argues for a bioethics without dignity: an ‘undignified bioethics.’     

Responsibilities in elderly care: Mr Powell's narrative of duty and relations

In Western countries a considerable number of older people move to a residential home when their health declines. Institutionalization often results in increased dependence, inactivity and loss of identity or self-worth (dignity). This raises the moral question as to how older, institutionalized people can remain autonomous as far as continuing to live in line with their own values is concerned. Following Walker's meta-ethical framework on the assignment of responsibilities, we suggest that instead of directing all older people towards more autonomy in terms of independence, professional caregivers should listen to the life narrative of older people and attempt to find out how their personal identity, relations and values in life can be continued in the new setting. If mutual normative expectations between caregivers and older people are not carefully negotiated, it creates tension. This tension is illustrated by the narrative of Mr Powell, a retired successful public servant now living in a residential home. The narrative describes his current life, his need for help, his independent frame of mind, and his encounters with institutional and professional policies. Mr Powell sees himself as a man who has always cared for himself and others, and who still feels that he has to fulfil certain duties in life. Mr Powell's story shows that he is not always understood well by caregivers who respond from a one-sided view of autonomy as independence. This leads to misunderstanding and an underestimation of his need to be noticed and involved in the residential community.     

Evidence-Based Laboratory Medicine: Is It Working in Practice?

The principles of Evidence-Based Medicine have been established for about two decades, with the need for evidence-based clinical practice now being accepted in most health systems around the world. These principles can be employed in laboratory medicine. The key steps in evidence-based practice, namely (i) formulating the question; (ii) searching for evidence; (iii) appraising evidence; (iv) applying evidence; and (v) assessing the experience are all accepted but, as yet, translation into daily clinical and laboratory practice has been slow. Furthermore, the demand for evidence-based laboratory medicine (EBLM) has been slow to develop.There are many contrasting observations about laboratory medicine, for example (i) there is too much testing vs insufficient testing; (ii) testing is expensive vs laboratories are expected to generate income; and (iii) test results have little impact on outcomes vs test results are crucial to clinical decision making. However, there is little evidence to support any of these observations. Integrating the principles of EBLM into routine practice will help to resolve some of these issues by identifying (a) where laboratory medicine fits into the care pathway; (b) where testing is appropriate; (c) the nature and quality of evidence required to demonstrate the clinical utility of a test; (d) how the test result impacts on clinical actions; (e) where changes in the care pathway will occur; and (f) where benefit/value can be achieved. These answers will help to establish the culture of EBLM in clinical and laboratory practice.     

The Ethics of Engaged Presence: A Framework for Health Professionals in Humanitarian Assistance and Development Work

In this article, we present an ethics framework for health practice in humanitarian and development work: the ethics of engaged presence. The ethics of engaged presence framework aims to articulate in a systematic fashion approaches and orientations that support the engagement of expatriate health care professionals in ways that align with diverse obligations and responsibilities, and promote respectful and effective action and relationships. Drawn from a range of sources, the framework provides a vocabulary and narrative structure for examining the moral dimensions of providing development or humanitarian health assistance to individuals and communities, and working with and alongside local and international actors. The elements also help minimize or avoid certain miscalculations and harms. Emphasis is placed on the shared humanity of those who provide and those who receive assistance, acknowledgement of limits and risks related to the contributions of expatriate health care professionals, and the importance of providing skillful and relevant assistance. These elements articulate a moral posture for expatriate health care professionals that contributes to orienting the practice of clinicians in ways that reflect respect, humility, and solidarity. Health care professionals whose understanding and actions are consistent with the ethics of engaged presence will be oriented toward introspection and reflective practice and toward developing, sustaining and promoting collaborative partnerships.     

CLARIFYING APPEALS TO DIGNITY IN MEDICAL ETHICS FROM AN HISTORICAL PERSPECTIVE

Over the past few decades the concept of (human) dignity has deeply pervaded medical ethics. Appeals to dignity, however, are often unclear. As a result some prefer to eliminate the concept from medical ethics, whereas others try to render it useful in this context. We think that appeals to dignity in medical ethics can be clarified by considering the concept from an historical perspective. Firstly, on the basis of historical texts we propose a framework for defining the concept in medical debates. The framework shows that dignity can occur in a relational, an unconditional, a subjective and a Kantian form. Interestingly, all forms relate to one concept since they have four features in common: dignity refers, in a restricted sense, to the 'special status of human beings'; it is based on essential human characteristics; the subject of dignity should live up to it; and it is a vulnerable concept, it can be lost or violated. We argue that being explicit about the meaning of dignity will prevent dignity from becoming a conversation-stopper in moral debate. Secondly, an historical perspective on dignity shows that it is not yet time to dispose of dignity in medical ethics. At least Kantian and relational dignity can be made useful in medical ethics.     

Patient Perspectives of Dignity,Autonomy and Control at the End of Life: Systematic Review and Meta-Ethnography

Background

Research in the end-of-life context has explored the sense of dignity experienced by patients with advanced disease, examining the factors associated with it. Whereas certain perspectives regard dignity as an intrinsic quality, independent of external factors, in the clinical setting it is generally equated with the person’s sense of autonomy and control, and it appears to be related to patients’ quality of life. This study aims to explore the relationship between perceived dignity, autonomy and sense of control in patients at the end of life.

Methods

We conducted a systematic review and meta-ethnography using reciprocal translation and line-of-argument synthesis. The search strategy used MeSH terms in combination with free-text searching of the Pubmed, Web of Science, CINAHL, PsycINFO and Cochrane databases, from their inception until 2015. This identified 186 articles, after excluding duplicates. The inclusion criterion was primary qualitative studies in which dignity, autonomy and control at the end of life were explored. Studies were evaluated using the CASP guidelines.

Results

Twenty-one studies recording the experiences of 400 participants were identified. Three themes emerged: a) dignity mediated by the loss of functionality, linked to the loss of control; b) dignity as identity; and c) autonomy as a determining factor of perceived dignity, understood as the desire for control over the dying process and the desire for self-determination. We propose an explanatory model which highlights that those patients with an intrinsic sense of dignity maintained a positive view of themselves in the face of their illness.

Conclusion

This synthesis illustrates how dignity and autonomy are intertwined and can be perceived as a multidimensional concept, one that is close to the notion of personal identity. The ability to regard dignity as an intrinsic quality has a positive impact on patients, and the design of care strategies should take this into account.     

Science in the Service of Patients: Lessons from the Past in the Moral Battle for the Future of Medical Education

Medical schools instill a classic moral standoff in which the responsibility for the betterment of the patient stands at odds with the responsibility for the betterment of society. In critical ways, the latter, in the form of a robust research and technology-driven enterprise, has taken precedence over the former, resulting in harm to patients and individual dignity. This tradeoff can be traced to Abraham Flexner, the father of American medical education. In the wake of the Flexner report, American medicine set out on a course of exponential scientific advancement, but the mistreatment of research subjects and the erosion of the doctor-patient relationship in a health care system that is increasingly unaffordable, complex, and impersonal suggest that such progress has come at a price. Recent efforts by medical schools to emphasize humanism in their curricula and admissions processes have shown promise in orienting the values of academic medicine toward the individual patient’s well-being.     

Deciding with dignity: The account of human dignity as an attitude and its implications for assisted suicide

Discussions about assisted suicide have hitherto been based on accounts of dignity conceived only as an inherent value or as a status; accounts of dignity in which it appears as a (contingent) attitude, by contrast, have been neglected. Yet there are two good reasons to consider dignity to be an attitude. First, this concept of dignity best allows us to grasp a crucial aspect of everyday language: people often express fears of losing their dignity—and it is not possible to explain this with an account in which dignity is inherent. Second, such a concept allows us to adduce new argumentation where the argument based on status ends. Dignity considered as a status provides grounds to argue for the moral permissibility of assisted suicide, in the sense that in such an account individuals possess the normative power to waive their right to life. But the question then remains of how to decide what counts as a good reason for assisted suicide—and this is where an argument based on dignity as an attitude can provide illumination.     

Right to die with dignity?

The right to die with dignity is an ill-defined concept, with multiple, often inappropriate, interpretations. The current proposition is that the physician take full responsibility for protecting the patients rights, for ensuring a rational use of resources and for overseeing the decision-making process such that the information is adequate and the steps proportioned. This responsibility extends not only to the health status of the patient situation, to the patients prognosis, and to his/her expectations and wishes, but also to the benefits foreseen and to the cost-benefit ratio. Emphasis is placed on two aspects of this relationship. First, dignity can be interpreted in many ways and sometimes, in the name of dignity, the patient is exposed (or exposes him/herself) to suffering, pain and complications that can be avoided. Second, when no reasonable probability of survival is present and a better quality of life is impossible, efforts are better redirected to offering a better quality of death.     

A Computer-Interpretable Version of the AACE,AME, ETA Medical Guidelines for Clinical Practice for the Diagnosis and Management of Thyroid Nodules

ObjectiveClinical practice guidelines (CPGs) could have a more consistent and meaningful impact on clinician behavior if they were delivered as electronic algorithms that provide patient-specific advice during patient-physician encounters. We developed a computer-interpretable algorithm for U.S. and European users for the purpose of diagnosis and management of thyroid nodules that is based on the “AACE, AME, ETA Medical Guidelines for Clinical Practice for the Diagnosis and Management of Thyroid Nodules,” a narrative, evidence-based CPG.MethodsWe initially employed the guideline-modeling language GuideLine Interchange Format, version 3, known as GLIF3, which emphasizes the organization of a care algorithm into a flowchart. The flowchart specified the sequence of tasks required to evaluate a patient with a thyroid nodule. PROforma, a second guideline-modeling language, was then employed to work with data that are not necessarily obtained in a rigid flowchart sequence. Tallis—a user-friendly web-based “enactment tool”— was then used as the “execution engine” (computer program). This tool records and displays tasks that are done and prompts users to perform the next indicated steps. The development process was iteratively performed by clinical experts and knowledge engineers.ResultsWe developed an interactive web-based electronic algorithm that is based on a narrative CPG. This algorithm can be used in a variety of regions, countries, and resource-specific settings.ConclusionElectronic guidelines provide patient-specific decision support that could standardize care and potentially improve the quality of care. The “demonstrator” electronic thyroid nodule guideline that we describe in this report is available at http://demos.deontics.com/ trace-review-app (username: reviewer; password: tnodule1). The demonstrator must be more extensively “trialed” before it is recommended for routine use. (Endocr Pract. 2014;20:352-359)     

Costa Rica's 'White legend': how racial narratives undermine its health care system

A dominant cultural narrative within Costa Rica describes Costa Ricans not only as different from their Central American neighbours, but it also exalts them as better: specifically, as more white, peaceful, egalitarian and democratic. This notion of Costa Rican exceptionalism played a key role in the creation of their health care system, which is based on the four core principles of equity, universality, solidarity and obligation. While the political justification and design of the current health care system does, in part, realize this ideal, we argue that the narrative of Costa Rican exceptionalism prevents the full actualization of these principles by marginalizing and excluding disadvantaged groups, especially indigenous and black citizens and the substantial Nicaraguan minority. We offer three suggestions to mitigate the self-undermining effects of the dominant national narrative: 1) encouragement and development of counternarratives; 2) support of an emerging field of Costa Rican bioethics; and 3) decoupling health and national successes.     

A cluster randomized controlled trial of the effectiveness and cost-effectiveness of Intermediate Care Clinics for Diabetes (ICCD): study protocol for a randomized controlled trial

ABSTRACT: BACKGROUND: World-wide healthcare systems are faced with an epidemic of type 2 diabetes. In the United Kingdom, clinical care is primarily provided by general practitioners (GPs) rather than hospital specialists. Intermediate care clinics for diabetes (ICCD) potentially provide a model for supporting GPs in their care of people with poorly controlled type 2 diabetes and in their management of cardiovascular risk factors. This study aims to (1) compare patients with type 2 diabetes registered with practices that have access to an ICCD service with those that have access only to usual hospital care; (2) assess the cost-effectiveness of the intervention; and (3) explore the views and experiences of patients, health professionals and other stakeholders. METHODS: This two-arm cluster randomized controlled trial (with integral economic evaluation and qualitative study) is set in general practices in three UK Primary Care Trusts. Practices are randomized to one of two groups with patients referred to either an ICCD (intervention) or to hospital care (control).Intervention group: GP practices in the intervention arm have the opportunity to refer patients to an ICCD - a multidisciplinary team led by a specialist nurse and a diabetologist. Patients are reviewed and managed in the ICCD for a short period with a goal of improving diabetes and cardiovascular risk factor control and are then referred back to practice.orControl group: Standard GP care, with referral to secondary care as required, but no access to ICCD.Participants are adults aged 18 years or older who have type 2 diabetes that is difficult for their GPs to control. The primary outcome is the proportion of participants reaching three risk factor targets: HbA1c (<=7.0%); blood pressure (<140/80); and cholesterol (<4 mmol/l), at the end of the 18-month intervention period. The main secondary outcomes are the proportion of participants reaching individual risk factor targets and the overall 10-year risks for coronary heart disease(CHD) and stroke assessed by the United Kingdom Prospective Diabetes Study (UKPDS) risk engine. Other secondary outcomes include body mass index and waist circumference, use of medication, reported smoking, emotional adjustment, patient satisfaction and views on continuity, costs and health related quality of life. We aimed to randomize 50 practices and recruit 2,555 patients. DISCUSSION: Forty-nine practices have been randomized, 1,997 patients have been recruited to the trial, and 20 patients have been recruited to the qualitative study. Results will be available late 2012.Trial registration[ClinicalTrials.gov: Identifier NCT00945204].     

Planning oral health care for the elderly in Israel for the years 2000 and 2025

The methodology and conclusions of this workshop arc reported here because the problems requiring solution are not unique to Israel. They will increasingly have wide geographical and political application. The population of Israel since its establishment in 1948 has increased about sixfold. The numbers of the elderly (65+) have increased about tenfold. The current situation must be examined and estimates obtained for the next ten years. Only thus can the system be enabled to cope with the problem as it develops. The chosen method was a carefully preplanned, multisectorial workshop. Recommendations were discussed, amended and finalised. The recommendations of the workshop included: Baseline national data is urgently required. Guidelines are required for selecting specific target populations to which priority should be given. The current favourable situation of adequate oral health manpower in Israel makes it possible to encourage providers of oral health care towards treatment for the elderly. It is essential that the appropriate health authorities allocate sufficient funds for the following urgent purposes: the conduct of a national survey of the elderly population; the establishment of oral health units on a trial basis in some selected hospitals; support institutions of higher education to facilitate training in geriatric dentistry. Conclusions. The workshop was multidisciplinary because it was necessary to include all the expertise and experience available as vital elements of the policy making process. This type of workshop was found to be an effective tool for planning oral health services.     

Vaginal vault smears –''know more – do less'': a questionnaire survey of primary health care practitioners

BACKGROUND: The vaginal vault smear is a test for cellular atypia in women who have undergone a hysterectomy. In asymptomatic women the test has poor sensitivity and specificity. Current guidelines recommend: vault smears should not be used after hysterectomy for benign pathology; two vault smears (6 and 12 months postsurgery) should be taken when there is evidence of completely excised CIN II/III in the specimen. AIM: To describe primary health care professionals' self-reported knowledge and behaviour relating to the use of vault smears. DESIGN OF STUDY: Questionnaire. SETTING: South Birmingham. METHODS: Postal questionnaire survey to primary health care professionals (general practitioners and practice nurses, n = 424). Results: Response rate 80.0%, completed response rate 68.9%. Mean knowledge score was 7.3 out of possible 12 (SD 1.9); range 0-10. No significant differences were observed between GPs and practice nurses in knowledge scores, although differences were noted in the frequency of performing vault smears. An inverse relationship was observed between frequency of performing vault smears and level of knowledge about the test. There was a positive association between requesting further information and the 'knowledge score'. Only 11% correctly answered a question based on current guidelines. CONCLUSIONS: Knowledge of current guidelines was poor. Those who undertook fewest vault smears appeared best informed. This suggests that if all primary care professionals practised according to current guidelines, the number of vault smears performed may be reduced. Unnecessary vault smears may cause additional anxiety in women and have financial consequences for the NHS.