Exceptional patients and communication in cancer care-are we missing another survival factor?

OBJECTIVE: There is increased awareness of the issue of exceptional survival beyond expectations among cancer patients with poor prognosis, and researchers are starting to look closely at this phenomenon. In this study, we explored the perceptions of these "exceptional patients" as to their understanding and insight into their unusual experience. METHODS: We used a qualitative approach consisting of in-depth, open-ended interviews with exceptional patients in two locations, Texas and Israel, from 2007 to 2014. The interviews were audio-recorded and qualitatively analyzed, and gave rise to illness narratives entailing detailed descriptions of patients experience over the course of their disease and treatment. A qualitative content analysis focusing on contextual meaning was utilized. RESULTS: Twenty-nine patients participated in our study. The mean years since diagnosis was 9.55 years (range, 4-23 years). All patients had received conventional treatment, including surgery, chemotherapy, and radiation therapy. One of the prevailing themes in these interviews was related to the patient-doctor relationship. Most participants mentioned that the support they received from one or more physicians was a crucial factor for their exceptional survival. CONCLUSION: The significance of patient-doctor relationship in cancer survival requires further research. This research is especially important as it adds to the current trend of patient centered care and points to the added value of relationship between health providers and patients. This relationship, as perceived by these exceptional patients, can be a factor that adds to improved survival in cancer care.

Living outliers: experiences, insights and narratives of exceptional survivors of incurable cancer.

AIM: Unexplained prolonged survival given a diagnosis of incurable advanced cancer is a puzzling phenomenon that recently has attracted more scientific research. The purpose of this study was to add to the understanding of how exceptional patients perceive and explain their unusual experience. METHODS: We recruited patients for interviews from a population registry, patients with advanced lung or pancreatic malignancy who experienced exceptional survival. RESULTS & CONCLUSION: In total, 15 participants were interviewed. The main recurrent themes in most of the interviews were patient-doctor communication, family support and the patient's proactive attitude. In this study, patients attribute their longevity to relationships with their doctor and their family - not the type of treatment they received. Further research on this phenomenon is needed.

Biomedicine inside out: an ethnography of brain surgery.

The article discusses patient objectification from the viewpoint of the objectifying, rather than the objectified party. Resisting a dichotomy between physician-objectifying and ethnographer-humanising, the author portrays objectification not as an essential by-product of professional tendencies, epistemological bases, practical necessities and processes of socialisation but as highly dependent upon context. A further look is given to the settings within which the discursive dynamics of 'objectivity' and 'experience' come about through artefacts, space, symbols, bodily appearances and so on. The author portrays her relationship with Omer, a brain cancer patient whom she has followed over a period of 18 months and then focuses on her observations of his brain surgery. The fluctuations in the author's relationship with Omer (as a subject and as a body, alternately) are brought within their immediate contextual elements.

Experts and 'knowledge that counts': a study into the world of brain cancer diagnosis.

This paper provides a close, in situ look into the life of a neuro-oncology (brain cancer) clinic of a large hospital in Israel, based on a six-month participant observation. It points to the many challenges involved in the solidification of brain tumour diagnoses by different experts, and presents these epistemological and practical complexities as they uncover in daily routine. The paper's task is two-fold: first, to underline the technological and epistemological grounds of 'expertise' in the medicoscientific practice of diagnosis, and their roles in the assertion of expert authoritativeness; and second, to provide analytical tools to approach the complexity of diagnostic processes, the potential frictions it may create, and the related mechanisms of resolution. These mechanisms include Hierarchisation: ranking the relative validity and reliability of the different sources of information, eventually prioritising reports from more authoritative expertises (e.g. imaging reports would be considered more reliable than patients' accounts); Sequencing: relying upon the temporal dimension, and defining the discrepancy itself as a diagnostic sign (e.g. the degradation or amelioration of the disease); Negotiation: adjusting diagnoses via a preliminary exchange between experts and a consequent "fine tuning" of the reports (e.g. radiologists being aware of clinical evaluations before finalising their reports); Peripheralising: turning to other expertises to "explain away" symptoms that do not fit with a well established initial diagnosis (e.g. asserting that a symptom's source was orthopaedic rather than neurological); and pragmatism: using information only as far as it provided sufficient grounds for treatment decisions, leaving ambiguities unresolved. These five mechanisms are presented here in the context of the daily work of the clinic.

Boundary at work: alternative medicine in biomedical settings.

The study explores the process of boundary demarcation within hospital settings by examining a new phenomenon in modern medicine: collaboration between alternative and biomedical practitioners (primarily physicians) working together in biomedical settings. The study uses qualitative methods to examine the nature of this collaboration by calling attention to the ways in which the biomedical profession manages to secure its boundaries and to protect its hard-core professional knowledge. It identifies the processes of exclusion and marginalization as the main mechanisms by which symbolic boundaries are marked daily in the professional field. These processes enable the biomedical profession to contain its competitors and at the same time to avoid overt confrontations and mitigate potential tensions between the two medical systems.