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This chapter shows the key role played by patient labour in the birth, development, and decline of the hospital treatment of the mentally ill in the United States. Patient labour was present at the birth of the asylum, as a key feature of both theory and practice. In the late nineteenth century, its change to non-therapeutic drudgery corresponded with the ascendance of custodial pessimism and the warehousing of the chronically ill poor. Its revival at the start of the twentieth century was engineered by an optimistic alliance of psychotherapists, clergy and physicians, reflecting the national mood of expansionism and financial promise. Soon, however, both Freudians and harried hospital bureaucrats put an end to the idea that work would help individuals overcome their symptoms and re-direct their inner resources. In public asylums it was succeeded by non-therapeutic labour that hospitals relied upon for economic survival. When the asylums were dismantled in the 1970s and 1980s, legal attacks on unpaid patient work played a key role.

This chapter focuses on rural asylums in south Germany, the former kingdom of Wuerttemberg. Various forms of patient work in psychiatric institutions are discussed in relation to their varied contexts and diverse structures. Patient work in the asylums was organised in agricultural colonies. Various forms of handicraft in and outside the asylum were part of the daily life of patients in psychiatric family care settings. Zwiefalten, the oldest asylum in Wuerttemberg, is at the core of this study, while some attention is also given to the asylums of Schussenried and Weissenau. It is shown that various aspects of the institutions‘ history are not fully in line with the development of psychiatry in other regions of the country.

There are few ‘accepted’ approaches to dealing with tick- borne infections (including Lyme disease) that have not been challenged. This case study looks at my role in UK Lyme patient’s activism and policy change (for example, related to the NICE clinical guidelines process) focussing on one specific policy issue. It shows how critical analysis of scientific, clinical and other real- world evidence drew on and reflected the ethos of the Radstats network. It is a story showing how I worked with others with statistical skills - using science and evidence to challenge policy successfully. It explains how communities can take action, while using or creating scientific knowledge - to improve policy and people’s health. It shows how networks of communities can engage through social change (based on an understanding of policy and science) to make it more socially relevant and responsive, as well as more scientifically robust.

This chapter examines how the ideal of “doctor knows best” came under attack from multiple directions during the years between 1965 and 1975, leading one doctor to say that “the patient must prescribe for the physician.” It begins with an overview of health care legislation associated with the Kennedy and Johnson administrations, including the 1962 Kefauver-Harris Amendment. It then considers the rise of movements that sought to return “medical power to the people,” including student radicals associated with the New Left, radical feminists, and environmentalists. It also looks at advocacy groups within the broader consumerist movement, with particular emphasis on Public Citizen's Health Research Group, founded by Ralph Nader and Sidney Wolfe in 1971, and how its approach to protecting what Nader termed “body rights” helped to bring medical consumerism into the mainstream of American politics. Finally, it discusses the 1970 Patients' Bill of Rights and its provisions on informed consent, along with the emergence of a more domesticated version of medical consumerism.

Research in code-switching, undertaken against the backdrop of very negative attitudes towards the concurrent use of two or more languages within the same conversation, has traditionally been geared towards rehabilitating this form of language use. From being seen as a random phenomenon reflecting the user’s lack of competence, code-switching is currently seen as sign of an advanced level of competence in the languages involved and as serving different interactional functions. Now that code-switching has been rehabilitated, the research tradition faces an entirely new challenge, namely that of its continued relevance. This book argues that, in order to overcome this challenge, bilingualism must be seen as consisting of diverse interactional practices and be investigated as such. This chapter outlines a methodology, described as an inductive perspective, which can be used in describing interactional practices involving the use of two or more languages and illustrates it initially by means of a monolingual example. The monolingual practice described in the chapter is the use of ‘how are you?’ by doctors to elicit patients’ presenting concerns.

This chapter serves as an introduction to the topic, including a brief outline of the history and development of the field. It argues that understanding patients’ experiences is a crucial element in quality assurance, helping to redress the imbalance between the technological focus of much of modern medical care and the communication and caring skills that are so important to patients. The background to the policy focus on patient-centred care is outlined, the concept is defined, and some landmark studies of illness experiences are described. The chapter ends with a discussion on how the knowledge gained from studies of health and illness experiences can be used to transform the quality of care.

The aim of this chapter is to explore the broader meaning and application of rights talk in connection with health from the 1970s to the early 1990s. It begins by considering the various ways in which the language of rights was used in the context of health. The chapter then moves on to consider the application of such language, through attempts to introduce a Rights of Patients Bill. A selection of patient’s rights guides and charters are also analysed, and the chapter suggests that it was unclear whether these were addressed to the individual patient, or all patients. A more collective understanding of patients’ rights was exhibited by organisations such as the Community Rights Project, which aimed to enhance democracy and accountability within the NHS through the language of rights. The establishment of Department of Health’s The Patient’s Charter in 1991, however, undermined such collective conceptualisations of rights. Addressed to the individual patient rather than all patients, The Patient’s Charter was indicative not only of an individualised approach to patients’ rights, but of a wider shift in the conceptualisation of the patient as consumer and who could speak for this figure.

This chapter describes the battles in Congress over recent efforts to pass legislation preempting state common law claims with respect to federally regulated products and activities. It highlights two successful efforts to enact laws shielding manufacturers of firearms and certain vaccines from liability and an unsuccessful effort by the petroleum industry to shield itself from liability for damages caused by a fuel additive that leaked out of underground storage tanks into groundwater. The chapter then examines an ambitious attempt by victims of HMO and insurance company negligence to persuade Congress to fix an unanticipated and highly inequitable preemption situation by enacting a Patients' Bill of Rights. Although Congress devoted scant attention to federal preemption of common law claims in the 1960s and 1970s, the congressional front of the preemption war at the turn of the century was both heavily contested and highly visible.

Seventy percent of Americans age 60 or over requiring decisions about treatment in the final days of life lack capacity to make these decisions. The biggest life-and-death decisions of their lives—literally—had to be made by someone else. Loved ones hold life and death in their hands because constitutional rights of autonomy and self-determination are extended by law to surrogates authorized to make medical decisions on patients’ behalf when the latter cannot. Yet despite their critical role, we know remarkably little about these surrogates, the decision-making process they follow, the choices they make, and the challenges they face. Drawing on the stories of two families—one demanding that physicians “just pull the damn plug” and another that life support be continued despite brain death—this chapter introduces the surrogates who determine the trajectories of life’s end. Systematic observations in two intensive care units, day after day, for more than two years offer a window on how these end-of-life trajectories take shape and change course. The chapter concludes by showing how lessons from the intensive care units are relevant to future patients and their loved ones as well as physicians, nurses, chaplains, social workers, lawyers, scholars, bioethicists, and policy makers.

This chapter introduces health care providers in the ICU, patients, and especially their significant others. It depicts the misfortunes that brought patients to the ICU, their impact on patients’ decision-making capacity, and how capacity determinations are made. The chapter traces the worlds from which patients traveled and their very diverse backgrounds (age, race/ethnicity, marital status, religion, health insurance, affluence of residence). It shows the arrangements patients made in advance to plan for medical decision making on their behalf—including preparation of advance directives—and what happens when, as is usually the case, they made no preparations. The chapter introduces the friends and family who visit, interact with health care providers, and maintain the occasional vigil at the bedside. It describes their characteristics, the complex tangled family trees from which some travel, family dynamics, and the sometimes challenging or contentious struggles to determine who gets to speak on behalf of the patient. The chapter examines the relationship of surrogate decision makers to the patient and how the former come to understand their role and responsibilities. Finally, ICU health care professionals’ characteristics and bedside manner are described.

This chapter outlines the topography of provision for ‘pauper lunacy’ in Ireland examining the rationale behind the decision to introduce legislation in 1817 and assesses the relationship between local and national systems of asylum governance with particular reference to the establishment of the Carlow District Lunatic Asylum in 1832. The chapter demonstrates that the Irish asylum system formed part of a broader pattern of precipitate state intervention in social, medical and welfare services that inhibited a high level of centralised control and was informed by a general trend towards the institutionalisation of mental illness within allegedly ‘humane’ curative asylums evident throughout Europe in the period. Finally, it suggests that the failure to devise clear regulations, to provide a robust lunacy inspectorate and to incorporate the asylums into other forms of welfare provision ensured that legal structures were negotiated at a local level.

Drawing on asylum case histories, minute books and patients’ letters, this chapter provides some understanding of life in Enniscorthy and Carlow asylums for staff and patients by exploring the management and treatment regimes. As the chapter argues, the medical regimes in Carlow and Enniscorthy asylums were mapped onto contemporary formulations of moral management and prison reform. While Carlow and Enniscorthy were modest-sized asylums, financial and management problems, similar to those impacting upon larger institutions, adversely affected patient care and by the late nineteenth century the early optimism associated with moral management had evaporated. Throughout the century and in keeping with theories of moral management and the non-restraint movement, asylum officials were preoccupied with maintaining order and regularity in asylums that were often overcrowded and in poor physical condition. Consequently, disciplining both patients’ and staff's behaviour and bodies became a defining management strategy. Yet, patients’ experiences were heterogeneous and they experienced the regimes of care in various ways as therapy, exploitation and punishment.

This chapter examines the efforts made by psychiatrists and patients to address the public and challenge the stigma attached to mental illness and its treatment. Analysing a selection of accounts authored by psychiatrists and patients, it considers how the shared world of the asylum and mutual experiences of discrimination created parallels in their narratives. Erving Goffman’s analysis of stigma is drawn upon to consider the difficulties facing former patients who sought to challenge the stigma of mental illness, and to shed light on writers’ strategies, which changed as treatment regimes evolved over time. Many former patients sought to reintegrate themselves into the community by distancing themselves from the ‘otherness’ of mental illness. The chapter argues that the frequently adversarial nature of the relationship between psychiatrists and patients hindered collaborative efforts to tackle the stigma attached to mental illness and its treatment. Furthermore, psychiatrists’ preconceptions regarding the public inhibited their efforts to engage in meaningful dialogue.

This chapter argues that the image of the violent, chronically-ill male mental patient predominated throughout the twentieth century, and has played a pivotal role in debates on health care policy and perceptions of risk and mental illness. It commences by tracing the historiographical debate on gender and mental illness, before analysing how the psychiatric nurses’ union mobilised the image of the violent and depraved madman to bolster claims for higher pay and to attempt to prevent women from nursing male patients. It explores how psychiatric nurses reignited these discourses and fuelled stigma by arguing for the retention of and investment in institutional provision following the inclusion of psychopathy into the remit of nursing under the 1959 Mental Health Act, and the Government’s decision to abolish mental hospitals and establish services in the community. The chapter concludes by arguing that the stigmatising image of patients generated by nurses in turn rebounded to tar the professional status of nurses.

This chapter explores the interactions of voluntary, professional and state provision in the field of mental health throughout the period 1870 to 1970, focusing on the Mental After Care Association: the only voluntary group in this sector whose history spans the entire period under study. This long, unbroken chronology offers an unrivalled opportunity to explore how it affected, and was in turn affected by, other agents in the field of mental health, illuminating the interconnections between state provision, healthcare professionals, patients/service users, the public and voluntarism. The chapter explores how the Association represented mental illness when trying to solicit public support, and demonstrates how professional groups worked through the Association to advance their objectives. The strategies adopted by the Association in different eras are contextualising by drawing a comparison to the path taken by the National Association for Mental Health.

This introductory chapter provides an overview of the working lives of paid carers over two centuries. The emergence of modern nursing is usually dated to the mid-nineteenth century. Its complex evolution and international variations were shaped by the relationship between nursing and the state, religious influences, economics, a concern with social welfare, class and gender issues, scientific innovation, the reform of hospitals, and the development of a distinct body of nursing knowledge. Such analysis tends to prioritise the experiences of the general nurse while the asylum attendant/ psychiatric nurse tends to be either overlooked or described in a way that suggests inferiority. A narrative of catching up and falling behind imbues these debates with general nursing serving as an exemplar. This perspective neglects to consider the appropriateness of general hospital attitudes and practices to the care of the mentally ill, the special qualities and specific skills that might be demanded of the asylum attendant/ nurse, and the distinctive problems presented by their working environment. The idea that nurses’ needs and experiences can shape their responses to patient needs, and thus wider care regimes, is only just gaining credence but is the starting point for this collection of essays.

This chapter argues that psychiatric nurses were, like their medical colleagues, regarded in the nineteenth century with a measure of hostility within nursing as a whole. In Ireland nurses were specifically hired for their capacity to control patients, and their ability to care for the sick was secondary to their contribution to the efficient management of an overcrowded District Asylum System. Good nurses were notoriously difficult to recruit, despite the limited employment options available in the country. Yet nurses were a vital element in the Irish Asylum system. In the West of Ireland in particular, many patients were monoglot Irish speakers, while the doctors and governors were English speaking. Nursing staff, many of whom were bilingual, therefore played a crucial role in the doctor/patient relationship, wielding significant power, particularly from the patient perspective. Nurses were resident in the institutions, and were the daily companions as well as official observers of the patient body, to a much greater extent than general nursing staff in large hospitals. This chapter locates changes in the profession within the context of nursing as a whole, and within a rapidly changing political landscape in Ireland itself.