A journey of suffering: living with amyotrophic lateral sclerosis in South Korea.

Amyotrophic lateral sclerosis presents significant challenges for patients because of the devastating disease characteristics and the fact that there is no treatment available. In this article, we explored the illness experiences from the perspectives of patients with amyotrophic lateral sclerosis in the sociocultural context of South Korea. Fifteen patients were observed and interviewed between September 2009 and July 2010 in the metropolitan area of South Korea. We used an ethnographic approach for data collection and analysis. The meta-theme generated was "a journey of suffering," and three themes emerged: (a) off the course, (b) drifting, and (c) on a new boat. Participants experienced multidimensional suffering as the disease progressed. Healthcare professionals should understand that, for many patients, this disease is a process or a series of experiences rather than a single diagnosis. This knowledge would allow healthcare providers to help patients prepare for those needs that arise as the disease worsens.

Abandonment at the end of life from patient, caregiver, nurse, and physician perspectives: loss of continuity and lack of closure.

BACKGROUND: Surveys and anecdotes suggest that patients and family members sometimes feel abandoned by their physicians at the transition to end-of-life care. To our knowledge, no prior studies describe abandonment prospectively. METHODS: We conducted a longitudinal, qualitative study of patients, family caregivers, physicians, and nurses using a community-based sample. Using a purposive strategy, we recruited 31 physicians who identified 55 patients with incurable cancer or advanced chronic obstructive pulmonary disease, 36 family caregivers, and 25 nurses. Eligible patients met the prognostic criterion that their physician "would not be surprised" if death occurred within a year. Qualitative, semistructured interviews were performed at enrollment, 4 to 6 months, and 12 months and were audiotaped, transcribed, and coded by an interdisciplinary team. When asked to talk about hope and prognostic information, participants spontaneously raised concerns about abandonment, and we incorporated this topic into our interview guide. RESULTS: Two themes were identified: before death, abandonment worries related to loss of continuity between patient and physician; at the time of death or after, feelings of abandonment resulted from lack of closure for patients and families. Physicians reported lack of closure but did not discuss this as abandonment. CONCLUSIONS: The professional value of nonabandonment at the end of life consists of 2 different elements: (1) providing continuity, of both expertise and the patient-physician relationship; and (2) facilitating closure of an important therapeutic relationship. Framing this professional value as continuity and closure could promote the development of interventions to improve this aspect of end-of-life care.

Family history of diabetes as a potential public health tool.

Given the substantial morbidity and mortality associated with type 2 diabetes, it is important that public health seek ways to delay or prevent the onset of this condition. Risk factors for type 2 diabetes are well established and include underlying genetic susceptibility. Despite this knowledge, as well as significant advances in understanding the human genome, the prevalence of type 2 diabetes continues to rise at an alarming rate. Because type 2 diabetes is a complex condition involving a combination of genetic and environmental factors, DNA testing for susceptibility genes is not yet warranted. However, because family history reflects genetic susceptibility in addition to other factors, it may be a useful public health tool for disease prevention. When evaluating family history as a public health tool, several important issues need to be considered, including the analytic and clinical validity and the clinical utility of using family history as a screening tool. These issues as well as a review of the epidemiologic evidence evaluating family history as a risk factor will be reviewed.Overall, a family history approach appears to be a promising new public health tool to fight the growing epidemic of diabetes in the United States. Adequate levels of funding to further evaluate this approach and to develop appropriate tools should be made available for research activities focused on this important area.

Studying communication about end-of-life care during the ICU family conference: development of a framework.

PURPOSE: Family-clinician communication in the intensive care unit (ICU) about withholding and withdrawing life support occurs frequently, yet few data exist to guide clinicians in its conduct. The purpose of this study was to develop an understanding of the way this communication is currently conducted. METHODS: We identified family conferences in the ICUs of 4 Seattle-area hospitals. Conferences were eligible if the physician leading the conference believed that discussion about withholding or withdrawing life support or the delivery of bad news was likely to occur and if all conference participants consented to participate. Fifty conferences were audiotaped, transcribed, and analyzed by using the principles of grounded theory. RESULTS: We developed 2 frameworks for describing and understanding this communication. The first framework describes communication content, including introductions, information exchange, discussions of the future, and closings. The second framework describes communication styles and support provided to families and other clinicians and includes a variety of techniques such as active listening, acknowledging informational complexity and emotional difficulty of the situation, and supporting family decision making. These frameworks identify what physicians discuss, how they present and respond to issues, and how they support families during these conferences. CONCLUSIONS: This article describes a qualitative methodology to understand clinician-family communication during the ICU family conference concerning end-of-life care and provides a frame of reference that may help guide clinicians who conduct these conferences. We also identify strategies clinicians use to improve communication and enhance the support provided. Further analyses and studies are needed to identify whether this framework or these strategies can improve family understanding or satisfaction or improve the quality care in the ICU.