City Research Online

Opting not to dialyse: A practitioner research study to explore patient experience

Noble, H. (2009). Opting not to dialyse: A practitioner research study to explore patient experience. (Unpublished Doctoral thesis, City University London)


As the number of patients reaching stage 5 chronic kidney disease (CKD) increases worldwide, a similar trend can be seen in the UK. A disproportionate figure are older, frailer and more dependent with an increased prevalence of comorbidities. Subsequently, there is greater awareness among nursing and medical staff that dialysis may not improve survival rates and may impact considerably on the quality of life of these patients. Renal Services are being developed in order to support those deciding not to dialyse, although little is known about their experiences or concerns. Over recent years a number of directives have encouraged the principles of palliative care within non-specialist settings for people who do not have cancer, but it cannot be assumed that all people with a terminal illness have the same end of life needs.

This Practitioner Research study explored the experiences of patients with stage 5 CKD who had opted not to undergo dialysis to treat their renal failure. Patients were managed within a Renal Supportive Care Service at a London Hospital Trust. Data were generated longitudinally via 30 case studies of patients over an 18-month period or until the patient's death, with additional data collected from 19 carers. Naturally occurring clinical consultations made up the 82 interviews and took place in the clinic setting or in the patient's home. Findings were fed back to the renal multidisciplinary team, with nurses working in the service and with a 'validation' group of UK nurses working with a similar population to check for relevance and resonance of the study findings. Field notes were maintained throughout the study and incorporated observations of patient trajectories once referred to the service. Data analysis was conducted following an approach advocated by de Wet and Erasmus (2005) which offers guidance on rigorous qualitative analysis.

Generally, patients entering the service were frail, in poor health and at an advanced age. Some patients appeared unclear about the decision-making process and what had been agreed in terms of how their kidney failure would be treated. Common presenting symptoms included breathlessness, oedema, pruritus, nausea and vomiting, lethargy and insomnia, pain, immobility, depression and bowel and bladder problems. Some symptoms were treated successfully while others, such as difficult-to-treat oedema, indicated that the end of life was approaching. In addition, patients had to manage an uncertain prognosis, with some preparing for death that didn't always arrive as expected and others living with the worry that deterioration could occur at any time. Seventeen patients died during the study, the average length of life from first referral into the service until death being 15 months (range: 1-35 months). Three trajectories to death were identified: a typical uraemic death; death caused by another illness other than renal disease; and death where the cause was unclear.

Previous research has studied trajectories to death in cancer, chronic disease and old age with little known about the trajectory in those with stage 5 CKD. This study demonstrates the uniqueness of the renal trajectory to death in those managed without dialysis and highlights how services might improve to better meet the needs of this population. Findings from this study are likely to be of international interest and have implications for policy, education and research.

Publication Type: Thesis (Doctoral)
Subjects: R Medicine > RC Internal medicine
R Medicine > RT Nursing
Departments: Doctoral Theses
School of Health & Psychological Sciences
School of Health & Psychological Sciences > School of Health & Psychological Sciences Doctoral Theses
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