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This chapter discusses the importance of storytelling and narratives in honoring the patient's story while providing end-of-life care. It explains that an illness narrative portrays signs, symptoms, and treatment aspects as well as various ways of suffering, and that it helps the caregiver to interact effectively with a suffering patient. The chapter discusses the use of stories in the education of caregivers, the teaching of medical students to practice patient narrative, and the role of the caregiver in the narrative.

Experienced-based Co-design (EBCD) is a form of participatory action research that specifically seeks to improve patient experiences, and therefore the broader quality, of healthcare services. Since being piloted in an English head and neck cancer service in 2006, EBCD has been implemented internationally in a range of clinical services. The aims of EBCD are to capture, understand and then improve how patients actually feel about and experience a health care process or service. The approach combines (1) a user-centred orientation (by adopting an ethnographic and filmed narrative approach) and (2) a participatory, collaborative change process, allowing staff to ‘see the person in the patient’ and placing patient experience at the centre of quality improvement. Patients and staff are equal partners in the overall co-design process. Independent evaluations of EBCD have shown positive impacts on the way staff deliver care as well as improving the experiences of patients. Dissemination of the approach has included the production of open-source, web-based EBCD toolkits that enable healthcare staff to directly partner patients and carers in improving local health care services. This chapter begins by briefly reviewing the use of patient experience data to improve the quality of health care services; it then outlines the origins of EBCD and provides an overview of a typical implementation, before reflecting on the evidence-base for such approaches. Possible future developments in the field of co-design and other ‘dialogic’ forms of organisational development are then discussed.

The To Err is Human report rests upon a series of historical episodes—the early development of safety thinking in healthcare, the evolution of safety thinking in the safety sciences, and accumulating stories of personal suffering and tragedy experiences by patients. Concerns about the safety of healthcare date at least as far back as the Code of Hammurabi. Early efforts at improving safety appeared sporadically in the eighteenth and nineteenth centuries, but these were isolated and not sustained. Malpractice concerns were also entangled with safety, and the first malpractice crisis in the United States came about due to advances, rather than deficiencies, in care. Public and governmental interest in safety more generally developed out of railway accidents in the nineteenth century. Notions of accidents evolved over time, moving from accident proneness to the domino model, to more complex models such as Reason’s Swiss cheese model. Libby Zion's death results in New York state legislation regulating medical trainees’ supervision and duty hours, marking a change from a self-regulating profession to a more typical service industry. Recognition that health professionals involved in adverse events are also, in a sense, victims begins to grow.

Chapter 2 follows the unlikely pact between U.S. occupying forces and patriotic doctors through its fraying under the auspices of Cuba’s first sovereign government (1902-6) and its revival during another U.S. occupation (1906-9). As public alarm grew over a ballooning institutional population and patient death rate, Mazorra’s status as an icon of a sovereign Cuba increasingly cast doubts on the political health of that nation. Reformers, doctors, and patients all contributed to the project of unpacking what sovereignty would mean for Mazorra and Cuba.