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Examining renal patients’ death trajectories without dialysis
  1. Helen Noble, Lecturer,
  2. Julienne Meyer, Professor,
  3. Jackie Bridges, Senior Research Fellow,
  4. Daniel Kelly, Reader and
  5. Barbara Johnson, Senior Lecturer
  1. Helen Noble is Lecturer, Adult Nursing, School of Community and Health Sciences, City University London, Julienne Meyer is Professor, Care for Older People, and Jackie Bridges is Senior Research Fellow, Care for Older People, School of Community and Health Sciences, City University London, Daniel Kelly is Reader in Cancer and Palliative Care, Middlesex University, London, and Barbara Johnson is Senior Lecturer, Services Development, School of Community and Health Sciences, City University London. Email: helen.noble.1{at}city.ac.uk

Abstract

Background: Minimal work has been carried out into dying trajectories of people with stage-5 (end-stage) chronic kidney disease (CKD). Consequently, little is known about such patients and how they and their families/loved ones cope with the dying phase of the disease. Aim: This article reports on part of a larger, qualitative study exploring the experiences and trajectory towards death of people with stage-5 CKD who decided not to undergo dialysis. It provides case studies to illustrate the encountered death trajectories. Methods: Interview data were gathered during naturally occurring consultations with patients with stage-5 CKD and/or carers who were seen at a nurse-led, renal supportive care service. All patients referred to the service were asked to participate. Thirty patients and 17 carers were recruited. Patients were seen at approximately 3-month intervals until they died or the study finished. Carers took part in the consultation when present. Eighty-two consultations were included in the wider study. Results: Although the expectation was that patients would die from renal failure following a gradual decline in functional status, this was not always the case. The study identified three trajectories: those who died a typical uraemic death, those who followed another death trajectory, e.g. heart failure, and those where the cause of death was unclear. Conclusions: The management of patients dying from stage-5 CKD and for whom the time and manner of death is unknown can be problematic for healthcare professionals. Conflicts of interest: none

  • Case studies
  • Dying trajectories
  • End-stage chronic kidney
  • disease
  • Exploratory research

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