An exploration of complex treatment decisions with older people deciding between dialysis and palliative care in end-stage kidney disease

An exploration of complex treatment decisions with older people deciding between dialysis and palliative care in end-stage kidney disease

PhD project title and outline, including interdisciplinary dimension:
An exploration of complex treatment decisions with older people deciding between dialysis and palliative care in end-stage kidney disease

Background: Historically, palliative and end-of-life care has been neglected and undervalued in end-stage kidney disease (ESKD) and conversations between healthcare staff and patients are limited1. ESKD is the permanent loss of kidney function and without intervention such as dialysis, death will occur. Decision-making about treatment is complicated as there are no randomized controlled trials and only a small number of observational studies providing predictive guidance for which patients will have poor dialysis outcomes2. Some older, frail patients with ESKD opt for dialysis which they may later regret; others refuse dialysis, opting for palliative care. The decision-making process is poorly understood and patients’ preferences, goals and values are not always prioritised3.

Aim: To gain an in-depth understanding of the decision-making process between dialysis and palliative care from patient’s and carer’s perspectives; how satisfied patients and carers are with treatment decisions over time and how the decision-making process could be improved.    

Method: Thirty patient-carer dyads will be recruited from two renal units in Northern Ireland and invited to take part in exploratory qualitative interviews as they decide between dialysis and palliative care, then at 4, 8 and 12 months, to explore contentment with the treatment decision and impact on their disease trajectory. The purpose of this study is to gain an in-depth understanding of older patients with ESKD and their treatment decisions and potential associated decision regret, and the views of their carers. The proposed research will continue to include active involvement of service users including members of the Northern Ireland Kidney Patient Association. 

Outcomes: Theoretically robust findings will assist the development of a well-designed complex intervention for promoting patient centred decision-making, focused on patient-centred values and preferences.

Primary supervisor: Dr Helen Noble (Nursing and Midwifery)
Secondary Supervisor:
Professor Peter Maxwell  (School of Medicine, Dentistry and Biomedical Sciences)
External Partner/Organisation: Marie Curie Hospice Northern Ireland

 

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