title: Narratives of continuity among older people with late stage chronic kidney disease who decline dialysis.
abstract: Chronic and life-threatening conditions are widely thought to shatter the lives of those affected. In this article, we examine the accounts of 19 older people diagnosed with late stage chronic kidney disease who declined dialysis. Accounts were collected through in-depth interview in the United Kingdom (March-November, 2010). Drawing on a phenomenological approach, we focus particularly on the embodied and lived experience of the condition and on how participants constructed treatment modalities and approached treatment choice. We look toward contemporary elaborations of the conceptual framework of biographical disruption to illustrate how participants managed to contain the intrusion of illness and maintain continuity in their lives. We argue that three interactive phenomena mitigated the potential for disruption and allowed participants to maintain continuity: (a) the framing of illness as "old age"; (b) the prior experience of serious illness; and (c) the choice of the treatment with the least potential for disruption. We conclude that a diagnosis of chronic illness in late life does not inevitably shatter lives or engender biographical disruption. Instead, people are able to construct continuity owing to complex narrative interpretations of diagnosis, sensation and treatment choices.
authors.affiliation: Marie Curie Palliative Care Research Unit, UCL Division of Psychiatry, University College London, Charles Bell House, 67-73 Riding House Street, London, W1W 7EJ, United Kingdom.
authors.forename: Henry
authors.initials: H
authors.lastname: Llewellyn
authors.affiliation: Marie Curie Palliative Care Research Unit, UCL Division of Psychiatry, University College London, Charles Bell House, 67-73 Riding House Street, London, W1W 7EJ, United Kingdom. Electronic address: joseph.low@ucl.ac.uk.
authors.forename: Joe
authors.initials: J
authors.lastname: Low
authors.affiliation: Department of Primary Care and Public Health, School of Public Health, Faculty of Medicine, Imperial College London, Charing Cross Campus, Reynolds Building, St Dunstans Road, London, W6 8RP, United Kingdom.
authors.forename: Glenn
authors.initials: G
authors.lastname: Smith
authors.affiliation: Department of Palliative Care, Royal Free London NHS Foundation Trust, Royal Free Hospital, Pond Street, London, NW3 2QG, United Kingdom.
authors.forename: Katherine
authors.initials: K
authors.lastname: Hopkins
authors.affiliation: Department of Nephrology and Transplantation, Royal Free London NHS Foundation Trust, Royal Free Hospital, Pond Street, London, NW3 2QG, United Kingdom.
authors.forename: Aine
authors.initials: A
authors.lastname: Burns
authors.affiliation: Marie Curie Palliative Care Research Unit, UCL Division of Psychiatry, University College London, Charles Bell House, 67-73 Riding House Street, London, W1W 7EJ, United Kingdom.
authors.forename: Louise
authors.initials: L
authors.lastname: Jones
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health; D002755:Choice Behavior; D005260:Female; D006801:Humans; D008297:Male; D033262:Narration; D036301:Qualitative Research; D006435:Renal Dialysis; D051436:Renal Insufficiency, Chronic / Q000473:pathology / Q000523:psychology* / Q000628:therapy*; D016312:Treatment Refusal / Q000706:statistics & numerical data*; D006113:United Kingdom
keywords: Aging; Biographical disruption; Chronic illness; Conservative care; Decision making; Kidney dialysis; Lived experience; United Kingdom