Disorders of Consciousness and Disordered Care: Families,Caregivers, and Narratives of Necessity

By their nature, care decisions for patients with severe disorders of consciousness must involve surrogates. Patients, so impaired, have lost their decision-making capacity and the ability to direct their own care. Surrogates—family members, friends, or other intimates—must step in and make decisions about ongoing care or its withdrawal. This article shares the narrative experiences of these surrogate decision makers as they encounter the American health care system and accompany patients from injury through rehabilitation. Through their perspectives, the article considers challenges to ongoing care and rehabilitation that are a function of a prevailing medical infrastructure and reimbursement framework better suited to patients with acute care needs. Specific attention is paid to the ethical challenges posed by reimbursement strategies such as “medical necessity” as well as those proposed for the Affordable Care Act. The argument concludes that when it comes to care for a disorder related to consciousness, its provision is not discretionary, and its receipt is not an entitlement but a civil right.     

The use of care pathways as tools to support the implementation of evidence-based practice

This article presents some of the data from a study exploring the experiences and views of a range of professional staff using care pathways in their everyday practice. It focuses on the views of doctors, nurses, and therapists. Within the context of delivering integrated care, several themes are explored in relation to the successful implementation of evidence-based care pathways.     

Increasing research capacity and changing the culture of primary care towards reflective inquiring practice: the experience of the West London Research Network (WeLReN)

A number of primary care research networks were set up throughout England in 1998 in order to (1) improve the quality of primary care research (2) increase the research capacity of primary care, and (3) change the culture of primary care towards reflective inquiring practice (NHSE, 2000b). It is not clear how best to operate a network to achieve these diverse aims. This paper describes the first 30 months of a network that adopted a whole system approach in the belief that this would offer the best chance of simultaneously achieving the three aims. A cycle of activity was designed to facilitate the formation of multidisciplinary coalitions of interest for research with complementary 'top down' and 'bottom up' programmes of work co-existing. At least 330 people participated in the generation of research questions of whom one third (33%) were general practitioners, 16% community nurses, 6% practice managers and other primary care practitioners. Over two fifths (43%) were 'key allies' - academics, health authority staff, community workers and project workers. One fifth (110) of all practices (500) in the WeLReN area have collaborated in at least one research project. The ratio of doctor:nurse participation in the 24 research project teams was markedly different in the supported coalitions (2:1) compared to projects devised and led by more experienced researchers (6:1). The evidence suggests that it is possible to operate a primary care research network in a way that develops coalitions of interest from different parts of the health care system as well as both 'top down' and 'bottom up' led projects. It is too early to tell if the approach will be able to achieve its aims in the long-term but the activity data are encouraging. There is a need for more research on the theoretical basis of network operation.     

Shared learning in practice placements for health and social work students in East London: a feasibility study

A voluntary organisation providing family support and mental health services carried out an enquiry into the feasibility of setting up placements in primary care for students from professional qualifying courses in community nursing, social work and occupational therapy to experience shared practice learning in their placement. Consultation with a range of courses from two universities in London and with GP practices and other primary care agencies in East London established that there was wide support for the idea from practitioners, managers and academic teachers. It was recommended that a small number of pilot placements be set up. It was acknowledged that the diversity of placement requirements across the spectrum of professional education is a limiting factor in bringing students together for practice learning. The authors suggest that in the longer term, the development of an interprofessional approach to practice learning will require structural changes to professional courses so as to bring their placement requirements more into line with each other.     

Common cancer-related symptoms among GP patients Opportunistic screening in primary health care

Objective - To study the occurrence of symptoms related to the five most common forms of cancer among patients regularly visiting primary care. To estimate the proportion of symptoms needing GP examination, and the number of tumours thus diagnosed. Design - Patients with some form of non-malignant chronic disease received a letter with information about cancer-related symptoms along with an invitation to regular check-up. The letter described the most common symptoms of breast, colorectal, lung, prostate and skin cancers. Setting - 12 health centres in Kalmar County, Sweden. Subjects - 5200 patients aged over 40 years. Results - One patient in 13 reported cancer-related symptoms to the GP. Women reported more symptoms than men, and almost half of them had had symptoms at previous check-ups. The GP was able to explain 7 out of 10 patients' symptoms directly. When other symptoms were examined, 8 cancers were diagnosed as well as 6 pre-malignant tumours, corresponding to 3 tumour diagnoses per 1000 check-ups. Conclusion ? While attending regular check-ups, patients may not report symptoms which cause anxiety and sometimes indicate serious diseases. It is possible to widen the perspective and link both primary and secondary prevention of certain cancers to the check-up.     

Newsletter number three - 2002

Patients who experience body symptoms in response to psychosocial stress are a challenge for the general practitioner (GP). This paper is a contribution to the improved treatment of these patients. It presents a specific psychosocial treatment model provided by the GP including the following steps: (a) taking a thorough symptom history, conducting a psychosocial anamnesis and exploring the patient's own perception of the illness, (b) developing alternative perceptions of the illness by understanding the psycho-physiological relationship; and (c) reducing the impact of psychosocial stress. The application of these specific techniques requires a trustful, helping alliance between the doctor and the patient and cooperation with mental health services.     

Characteristics of frequent attenders in different age and sex groups in primary health care

Objective. To explore depression from a gender perspective, by capturing depressed women's and men's formulations of their experiences and understanding of their situation. Design. Qualitative interview study. Setting. A healthcare centre in northern Sweden. Subjects. Eighteen patients who had been diagnosed with depression and treated for at least 6 months were interviewed in depth, both women and men of different ages and social status. Open questions were posed around the themes of Malterud's key questions, focusing especially on how the informants conveyed their experiences. Interviewing and qualitative data analysis went on simultaneously. Results. The experience of depression held similarities for men and women, but the outward manifestations differed by gender as well as socioeconomic status. Though experiences of high demands underlay the narratives of all informants, home or work had different priority. Men talked more easily about physical distress – often the heart – than about emotions. Women verbalized more readily emotional distress – shame and guilt – while physical symptoms often revolved around the stomach. Men dealt with insecurity by aggrandizing their previous competence, women by self-effacement. Conclusion. As clinicians we must listen attentively not only to the manifest but to the avoided or unarticulated. By doing so we might counteract normative gender patterns that highlight the depression of women and conceal that of men.     

校园网络环境下的病理生理学自主学习模式研究

目的探讨校园网络环境下的病理生理学自主学习模式。方法随机选取学院2012级临床医学6-7班、10-11班分别为对照组(传统教学模式)和教改组。教改组实施以网络为依托的"联组-整合、自主探究、合作交流"的自主学习模式,对学生考核成绩进行对比分析和问卷调查。结果教改组学生成绩高于对照组,学生的自主学习能力明显提高(P<0.05)。结论以网络为依托的"联组-整合、自主探究、合作交流"的自主学习模式可以实现以学助教,有利于学生的终身发展。